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Sunday, December 20, 2009

I'm Afraid to Jinx It.....


I have been stressing about the status of Greyson's Law.

A couple of months ago, I started lining up my letters of nomination for the Advisory Council that is to be created in accordance with Greyson's Law. After confirming the delivery of all of them, I was shocked to find out that as of Mid- August, no progress had been made of the formation of the Council or the implementation of the additional testing, except for the Cystic Fibrosis testing.


I was confused. And Angry!

I started making calls and trying to find out what was going on. My first call was the to the office responsible for handing out the monies to the departments responsible for enacting the legislation. Which in Greyson's Law's case would be the Texas Dept. of Health and Human Services (DSHS). I was stunned when I was told that the budget Rider that was meant for Greyson's Law was combined with the monies for 2 other new programs to be enacted by the DSHS, and that one of these projects had large budget overruns that were "unexpected" and had used all of the money allocated. All of IT! Not just it's portion! The portion for Greyson's Law too!


What's that saying? "Give a dog a bone?" Well, I started making calls. All of the contacts that we made during the work to get Greyson's Law passed. Scheduling meetings, agreeing to be patient and not attend meetings because of other sensitive matters to be discussed at the same time, worrying that nothing was being done, that Greyson's Law was destined to become what the Cystic Fibrosis was, an unfunded mandate....


I haven't heard much of anything for a couple of months, other than a few worrying facts from some sources. But then, two weeks ago, I heard that the Advisory Council was getting ready to be formed. I immediately called the DSHS and asked what I could do to help. I was told that they still had my letters of nomination and that the hopes were to get the Council up and working so that ways to find funding internally might be possible.

YEA! Baby steps are good too....


I worry about jinxing it, but this week I got an Nomination Information request form from the

DSHS via email!


Here's Hoping!

Friday, December 18, 2009

Greyson Was Born 2 Years Ago Today!

We as a family have passed two major milestones since I last Blogged; Greyson's First Angel Day and his second birthday. I don't know what it is, but I just haven't been compelled to Blog here lately. I don't know what it is, but I am having trouble getting in touch with my feelings lately. All of the emotions are still there and as strong as ever. In some ways, I guess I have started to come to terms with the fact that our Little Boy is in Heaven.

Believe me, I am not happy about it, but I have to accept it. Not for my sake, but for the sake of all of those that I love.
Nicole hit the nail on the head last year when she blogged about: "I wonder what kind of Birthday you have in Heaven?"
It is much easier on Greyson than it is us. I truly believe that our loved one's in Heaven are able to see us and be with us anytime that they want. I what to believe that he is always with us, but it is so hard to not be able to see or touch him.

The Love that our friends have for Greyson just absolutely dumbfounds me. I mean, I get that people were and are drawn to Greyson, but it is just humbling to me that so many have been affected by our sweet boy! Their love and support has been amazing! I feel lucky and blessed to be surrounded by so many wonderful people that love me and my family.

HAPPY SECOND BIRTHDAY GREYSON!!!

We love and miss you, and are sooo! proud of you.

Saturday, December 5, 2009

Last Year We Lived It... Now We Are Feeling It...

Broken and lost, raw and bare.







Simple words. The meaning of these words to my family right now are anything but.







This time last year we had to endure and master the unendureable, the unmasterable. A nightmare come to life, pain personified.







Endure we did, together, but forever changed.







I for one am still learning just how much.







December the 3rd was my 41st birthday. It is a day that I have been dreading. One year ago, we had our last family get together at my sister Adrienne's house and celebrated my birthday. Grey was his shining self. Despite the terrible disease that was ravaging his tiny body, he was bright and beautiful, smiling and sweet. I miss his loving looks and eyes, but I am proud that he too saw that love in our eyes for him.






I think I am most proud of that. The fact that he never knew what was coming. All he knew was that he was loved so much. His spirit was beautiful and it poured out of his smile and his eyes in abundance.



When the long dreaded day of my birthday arrived, first, after ushering Nicole and the boys off to school, I allowed myself to wallow in my pain. After the tears stopped, I was amazed and relieved to realize that my pride and thankfulness that I got to be Greyson's Daddy has now overtaken the strength of my grief. I am still broken, still sad, but better for it.


I think that I did learn about true and complete love. I learned it from Grey. I am finally able to thank God again for giving me Greyson. I haven't been able to for a very long time.




Daddy Loves You Greyson! Always and Forever.






To all of you that know and are dear to us, I thank you for your understanding and love. Please know the Nicole, the boys, and I will make okay because of your help. This is not to say that this journey is over. It is hard to describe, but we are reliving each day of last year again this year. I thought that it was only me, but Nicole has confided to me that she too is having this experience. Each day is full of "at this exact time last year..." Some of you are also experiencing some of this too.


Please know that your friendship honors us. We are better for it. I am better for it.






And from me to a certain friend, your respect humbles me and I hope to continue to deserve it, to earn it as you have earned and deserve my respect and admiration. Thank you for your kind words, they have given me strength.

Sunday, November 15, 2009

A Friday Night Out!




If I had to sum up how I have been these past few weeks....






I'm broken.






And I'm pissed about it.






I really thought that I was doing at least a decent job of functioning despite these feeling, you know, holding it together for the good of the family and all. Well, I have been fooling no one but myself. What's more, I have been getting pissy with Nicole when she calls me on it. Defensive, loud, belligerent and just ugly. Believe me. I wish that I wasn't having to own up to this fact. In fact as of Friday night, I was still getting upset with Nicole because of what I saw as her lack of understanding and acceptance of my grief and the processing of my grief.



I mean. how DARE she expect me to act as an adult though this, SHE of all people knows that I am lost without Greyson.






Yup!



Another great moment in the history of Bill Morris, wonderful husband and father! How selfless I am! How Noble!



Thinking about my behavior over the past couple of weeks makes me ill. I was totally sure that I was in the right and that Nicole was just being intolerant of my grief.






Friday night was a rarity. Nicole and I went out, just the two of us. What with the changes to my work schedule and my inability to get out of my own way, we haven't been connecting emotionally real well. About a month ago I had made a half-assed attempt to smooth things over by surprising Nicole with a band for her wedding set that I got for her on our 10 year anniversary. Well. The band didn't match and it didn't work. Nicole thanked me and asked me to return the ring so that we could get our money back.



I pouted, and didn't return the ring in time to get anything but a store credit back. Nicole asked me Friday morning to go with her to the store so that she could pick out a keepsake necklace for our trip to Buffalo next week. So after I finished work, off we went to San Antonio to the store and dinner.



While we drove, Nicole bravely again, tried to talk to me about how I have been acting. I was having none of it. Defensive to say the least! I could tell that she was getting exasperated with me when we still hadn't made any progress by the time that we arrived at the store.






While we were inside, I again saw how patient and understanding Nicole is. She insisted that I use the store credit to replace my old wedding band that I have had since our wedding day. She cited that it, being yellow gold didn't match her new Platinum ring in any way and that I therefore needed to have a new ring that would closer match hers. All of the emotional wrestling and sparing that we had done in the car, and she was spoiling me?! Shocked into meekness, I was quiet when we got back into the truck. Tears in her eyes, Nicole told me:






"Sweet, remember how hard Grey used to work to get your attention and give you attention? Even after he was really sick?







I do.





"You know, I believe that Greyson is still with us and trying to show us how much he loves us and misses us. But he can't get though your anger and your intense sadness. I don't believe that you can hear him or feel him when you are so sad and angry, Bill."



"Remember how happy you could make him just by talking to him or answering him? Have you thought about how upset he must be that he can't get you to hear him?"






I felt as if I had been kicked in the stomach.






Have I been unable to dream about him or see his attempts to reach me because of my dwelling on my pain?






I haven't had a dream about him or with him in months. Nicole is always seeing little signs that he has sent her. But none for me. Is this because of me too?






Today I was driving right past the store while I was working. On a whim, I asked my client if we could stop to check if my new band was ready. It was.




As soon as I saw it and the simple, plain beauty of the ring, all of the thoughts and doubts that have been rattling in my brain quieted. I want to start anew. I want Grey to know that I love him and even though I miss him,






I will try to be okay. For him.






For Nicole.



For Luke.



For Seth.



For Riley.



For me.



Forgive me.

Tuesday, October 27, 2009

Yesterday Was A Really Bad Day!


I have worked the weekends every weekend for the past 11 years. It was a change that we made to my schedule after we discovered that Seth had PKU (Phenyketonuria) from his newborn screening. We decided that the chances of his diet restrictions being ignored by caregivers at a daycare were too great of a risk to take. So I kept the babies home with me during the week until they went to kindergarten. I had always wanted to keep them out of daycare anyways and Nicole being a teacher and off when the kids are, it was just the best for me as a nurse to work the weekends. Besides, there is never a shortage of weekend shifts. So that has been our routine. Me off during the week and Nicole off on the weekends with the kids. Thank God for Nanna (Nicole's Mom), over the years, knowing that she is there to help Nicole has made it all work.

Well, since Grey's death, I have been alone during the weekdays. This has been a good and bad thing. It has gotten to the point that I have too much time to myself. Not to mention that Nicole is feeling it with 3 older boys all weekend alone. So it has come time for a change.

Sunday, October the 25th was the first Sunday off for me on my new schedule. I am now off on all the Sundays and working 2 additional shifts during the week. We had lots of ideas for the first Sunday and it all got messed up. Luke has been asking me to take him to the Home Depot to get the materials that he needs for his science project, so this had to get done. My van's battery died on Saturday and I needed to get a new one, so Luke and I went to Walmart first, while we were waiting for the van, I saw a Dad and his little boy walking through the Walmart. He was exactly the same age as Grey would be, and his was having a time riding his Daddy's shoulders. He had gotten a toy sword and was very proud to show me as they passed me. My greeting to this little boy was rewarded by a wonderful smile, which shook my heart and soul.

The pain.



The sadness.




I finished the day, and went to work for the night shift. As I drove home in the downpour of a fall thunderstorm, the black mood that had been creeping at the edges of my consciousness took hold. I got home desperate to find some sign of my Baby Boy, my Greyson, some sign that he was real, not a dream. something that he had touched, I went to his room and pressed my face to his bed breathing deeply, trying to catch some wisp of his scent, dust.





I panicked, I grabbed his Halloween Costume, the darling Giraffe, which I knew we had never washed, DUST!






Tears stinging my eyes, I stood in the middle of his room, trying not to lose it. His room didn't have the scent of sweet baby smell anymore, just the staleness of a unused room. I collapsed to sit in the middle of the room, and just blubbered like a baby. It has been over 10 months since he left us and the pain is just as new, just as raw, just as strong as ever. So much for the healing of time.


After sitting there for I don't know how long, I pulled myself out of his room and decided to blog about my feelings to keep myself busy until I had to leave to pick Seth up for his checkup at the Pediatricians. Those that know me may or may not know that one of the very problematic symptoms of my grieving process has been that I have been having sleep issues. At times I lie awake unable to shut off my mind, the last week of my son's life replaying endlessly in my mind.
Or more annoying, I fall asleep without even realizing it and sleep as if I, myself am dead. Nothing wakes me. NOT an alarm, not the phone, nothing short of shaking me awake works. I have been as much as a 2 hours late to work a couple of times.

Seth's appointment was for 9:30 am and I was going to pick him up and then drop him back at school after. I fell asleep typing on my blog, sitting up on the couch. Seth, sure that I had a car wreck, called Nicole at her school and she called me. 15 times. I woke up at 11:20 am, a crick in my neck and having missed the appointment totally.

My grief counselor has assured me that my issues with sleep are just a symptom of my grief. That in time it will pass. That when my mind can't handle it anymore, it shuts down.


So much for not curling into a ball and not moving. So much for being strong. I just keep letting people down.

Friday, October 23, 2009

Memories of My Grey....


I have found myself running through all of my memories of our brief time with our sweet boy. Most of the time, these moments happen to me on the way home in the morning after working a night shift. I guess that this is a improvement, because it wasn't that long ago that being alone on the night shift was just torture. Being alone with myself, I would be racked by the grief and regrets of dreams lost. At this particular point, I am travelling the memory circuit, transported back in time to the memories of the worst period of my life, the illness and death of my baby boy.


Not all of the memories are terrible, some are actually quite pleasant. All of them are laced with sadness.


The past couple of mornings, I have been replaying in my head, one particular memory. It was after we knew that Grey was terminal and his small body was rebelling against him. He was paralyzed and unable to move, when we held him it was like holding a newborn, we had to support his head and he would just melt in your arms, as if he were still a newborn. Nicole and I had my parents over to the house for dinner. We were trying to make sure that everyone spent some time with Greyson. We were still grasping at straws that Greyson might not be dying, that he would be paralyzed, but he would live. Anyway, I was sitting on the same couch that Grey and I always napped on. My Mom was sitting next to me on my left side and my Dad was sitting across the room on the opposite couch with Nicole. The boys were playing together on the XBox and I was holding Greyson on my chest with his face snuggled against me. Grey had lost all control of his head and as a result he always laid his head on my chest or shoulder. He was facing my Mom and she was talking to him. He was smiling and just taking it all in with his big, beautiful eyes. All of a sudden, he made a little cooing sound, which at this point, took a lot of effort and started to scratch at my shoulder, opening and closing his little hand. Just this simple little move took enormous effort for him to do at this point, and I was trying to figure out what Grey wanted. My Mom looked at Grey and asked "Is that your Daddy? Does your Daddy got you?" Greyson sighed a big sigh and scratched at my shoulder again smiling a grand smile. "Yes, Sweetheart, you love your Daddy don't you?" more smiles and sighing. Greyson snuggled against me even closer, as much as he could manage. My eyes were stung by tears, my heart pounding. My boy was making sure that he told his Nonnie how much he loved me.


Loved me....


I can count myself in a very exclusive club. I have experience the truest and purest form of love. The unchanged true and unconditional love of a parent for a seriously ill child. The complete acceptance of someone and the complete devotion of that child to me.


Definitely one of the special "Gifts" that Greyson has given to me.


I miss him.

Saturday, October 17, 2009

I Don't Have The Answers....

The other day, a father that I have been corresponding with sent me the following message:

"How do you make it through the day? It is so hard, I just can't get through some days."


My heart aching, I can totally sympathize with him. His loss is fresher that mine, his little boy only gone a few months, but I recognize and feel the pain that he is talking about. The pain makes you crazy and sure that if you take one more breath, your chest will surely burst. And instead of finding your heart, only a huge, gaping wound staring back from your empty chest. The sadness and pain can be crippling, paralyzing. I consumes very thought and breath totally. Tasks temporarily deaden and distract you from the pain, but it is constantly your companion and quickly returns.

This Father's plea for hope tore at me. I so wanted to be able to tell him that everything will be alright, that he will make it. The truth is, I can't. There are days still that I just don't know how I will manage to carry on. On the 12 th of this October, it was 10 months since our Grey died. I had a very rough time. I tried to blog, and wound up deleting it after trying to express my feeling for a couple of hours. Sometimes I just can't put into words what I am feeling. I just hurt too much.

I miss him too much.

I want to hold him too much.



In the end, all I could do was send this father a few empty words about trying to concentrate on supporting his wife, remembering the good memories and making time to fall apart.

Sounds pretty empty to me too.

How I wish I had the answers, for me as well as him.


Tuesday, October 6, 2009

Just Broken.



How are you and the family doing?




It's a pretty common question. All of us ask it when we run into friends that we haven't seen of heard from for a while. It is almost a reflex.


Normal.


The thing is, for me, nothing is normal, and I really am beginning to doubt that things will ever be normal again. My counselor tells me that I am stuck, broken and stuck, and that I will remain so until I get sick and tired of being sick and tired. If it didn't hurt so much it would almost sound like one of those jokes like "Who's on first?" She says that I need to be patient with myself and that I will continue to proceed though my grief in a manner that is right for me. Until then, she says to fake it. For the sake of family and close friends, fake it.


Fake that I am able to function?


Fake that I am not ready to scream all of the time?


Fake that work is just tedious at best?


Fake that I am happy?


No.


I really think that she means that I need to fake that I am dealing with the loss of my Grey. Fake that every breath doesn't burn with grief and guilt.


Fake that the fact that he has started to feel like a dream is making me lose my mind!


Fake that I remember what it feels like to have him melt into my arms.


Fake that I am not alone.


Fake that I know what I am doing.




Broken. There is no other way to describe how I feel. Loving him hurts. Missing him hurts. Knowing that my boys and my darling Nicole are missing him hurts. Knowing that Nicole is faking it for me hurts. She still cries herself to sleep at night sometimes.


Broken.


I wish I knew how to proceed from here. I am away from home and my wife most of the nights during the week. It is almost as if Nicole and I are just dating. We see each other less that people that are dating. This can't be healthy for our marriage. But she never complains. She is always supportive.


Broken.


I wish I knew where things are going from here.




Thank God that I have my family.

Sunday, September 27, 2009

Really! Are You Freaking KIdding!!?!


Whining ALERT!


If you do not what to read a grown 40 year-old man's whining, vacate this blog immediately!


This past year is getting on my last nerve. I have always felt very blessed in the health and good fortune that my family has been given by the good Lord for the majority of the 12 years that Nicole and I have been married. Starting with Greyson's illness, though, I have to admit that I am beginning to feel a little picked on. WE have not gotten any breaks as of late. In the first months after losing Greyson, we were very blessed and taken care of by our friends and family. With every one's help, we were able to pay off most of Greyson's Medical Bills. But since that, we have been having quite a few potholes. Most of them have come in the form of very expensive AC repairs. We have had to spend almost 3,000.00 dollars on replacing worn out components since March of this year. Every time that I think that we have the situation fixed, BOOM! RATTLE! CLANK! We replaced the outside compressor unit and the blower fan and motor, one would think that nothing else could break.


WRONG!


Nicole called me this morning, and told me that the AC was making a funny sound. "I'll call in a repair" I said. By 7:00pm, Nicole called me again, "Smells hot in the AC room and all it's doing is buzzing. It stopped working again!"


SHIT!!


Of course our AC man has been out of town for the weekend, which means that we may not even get a call back tomorrow.


I know in my heart that we are still blessed and that I shouldn't whine about this petty stuff, but come on! It's got to STOP sometime! Please!

Envy? Yes, I'm Sorry to Say.


Many of you out there read my wife Nicole's blog at http://www.greysgift.blogspot.com/. And have done so even before you started to read mine. I have always been blown away at the number of people that follow Nicole. She has 43 people that follow her and subscribe to her blog on blogspot, meaning that they are notified when she posts a new blog. I think that at the beginning, she and I both started our blogs to help us process our feelings and let those that care about us know how we are doing. At first we were both using it to vent the burdens that go along with losing Greyson.


Now, Nicole actually started her blog right after we received word from the Doctor that Greyson was terminal. She opened herself up and shared everything that happened during Grey's last days. Very powerful stuff.

I was much slower to join in. I came from a family background that involved allowing one's emotions govern your moods and actions. I have had in some ways a much harder time dealing with Greyson's death. Not because it hurts more or I loved him more that Nicole, because I have always been much more likely to see the negative side of things instead of the positive. For me emotions have the power to effect my interactions with others and affect my personality. For me worrying about something is just a natural step in the process. If I don't worry and obsess about something in the right amount, then I think that I didn't care about it in the right way or amount. A bit obsessive huh?

That's just how I always have been. Nicole is not like that at all. She is truly the sun to my moon. While everything is dark and foreboding for me, it is bright and hopeful for her. I have been trying to learn from her our entire marriage and I am proud to say that I have made great strides to improve on this in myself. You would have to ask Nicole for confirmation. I do have an annoying tendency to assume to much sometimes and take things for granted. However, one the primary ways that my "glass half empty" personality quirk still dominates me is when I am down or sad, and it really comes out and rears its ugly head in my blogging.


I have come to blog the most when I am down and missing Greyson terribly. The sadness just takes over. I don't have to tell you that, do I? Those of you that are still following this train wreck of a blog know that anyway! I made the decision while I was holding Greyson in my arms those last few days, that I would attempt to express to anyone interested the depth of my grief and the magnitude of my love for Grey. That is why I started to blog shortly after his death. I have driven many away because they find my pain too much to bear. And yes, the competitive side of me chafes at the fact that Nicole has such a larger following that do I.


In the truest sense though, it is not the fact that people are drawn to Nicole blogging that gets me. It is Nicole's ability to see the beauty and the good in our losing Grey. She has this complete faith that Greyson is in heaven and visits often. Not only that, but she has noticed things that convince her that Grey is dropping hints that he is indeed visiting and remains close. I find myself feeling left out that I can not see. I struggle with my inability to sense that he is near and happy. I find myself doubting how Greyson can be alright with out us.


There wasn't a minute that Greyson didn't want to be held, and nothing that couldn't be fixed by his Mommy and Daddy's arms. Doubt creeps in and shakes me. How can Greyson be okay without us there to take care of him and hold him?


It has been months and months since I have had any kind of dream about my son. I haven't seen him or felt him. I miss him. And yes, I envy Nicole that she has. I am glad, but I still wish that I could too.

Thursday, September 24, 2009

Who ME? Yup! Selfish!





Sometimes looking the mirror can be an uncomfortable experience.




These past couple of weeks, I have been a mess. Every morning I spend on the "this time last year" pity party that I have organized for myself as a routine for the count - down to the one year anniversary of Greyson's death.





Misery...





That's been my focus these past couple of weeks.




I had been attending a Grief Counseling Group for the past few weeks. It was, not a good fit. I found myself doing and behaving in a manner very unlike me.



I bailed.



I didn't call. I didn't step up and say that I was quitting. I just didn't show up. I have never been so irresponsible. NEVER.



Probably should have been my first clue.



Last week, at the insistence of Nicole and our grief counselor, I met with Nicole and the counselor at Nicole's scheduled appointment. I had to take the boys home, so I was late. I had some hard venting moments. It wasn't pretty. I guess that I have been bottling up some things. The thing that I harped on this particular secession was the fact that I was not only grieving the loss of the most pure, loving soul I have ever been blessed by, but the fact that I was being forced by our genetics to stop having children. For the past 10 years I have identified myself as the "Mr. Mom" staying at home with the boys so that we don't have to do daycare. Let me just put it this way, I have some anger issues about being forced to end this chapter of our lives in an, as I see it, premature way. We are being forced to stop having children because of not wanting to subject another baby to Krabbes Disease.









Not only have I lost my sweet little boy, but have lost my identity, Stay at Home Dad.






In retrospect, This must have had a huge impact on Nicole. Seeing me so distraught over losing our son and also having to accept no more babies was too much. She denies it, but not 2 days later, my darling wife Nicole offered me something more precious than any treasure. She offered me.....



To try one last time. She told me that really, what's a 25% chance of having another Krabbes Baby?



She, as broken hearted and grieving as she is, so wanted to see me happy and not miserable, that she was willing to tempt fate and give me my wish, a BABY.



A strange thing happened.



Faced with my greatest desire, I...



I saw myself. I saw myself for the first time in a long time. Not the grief, not the misery, not the poor, broken - hearted father, MYSELF.



Selfishness. I saw a very selfish man.



Nearly 3 years ago, Riley was spending his last school year at home with Dad. He would be starting Kindergarten the following year and I was scared. I liked having a baby at home with me. I liked being the father of a little baby. I adore babies. I love all children, but having a baby at home is by far, my favorite. Logically, I knew that at some point this part of our lives as a couple would be over. We aren't getting any younger after all.



Nicole was in heaven. She was totally happy. She was looking forward to having all of the boys in school and not being the couple with "little ones" anymore. Well, I had other ideas. I wanted another baby. And I had a plan to convince Nicole. We would try every trick in the book to have ourselves a little girl. At first Nicole didn't want to talk about it. It's funny, thinking back about it, I knew that I would get my way. I knew that Nicole wouldn't deny me something that I wanted this much.



I wanted. My wants. My needs.



Oh God.


All of the pain. All of the grief.



I caused it all.



If I hadn't been so selfish, Nicole would have been happy with the family that we had been blessed with. She had no unfulfilled needs, she was content. The boys were happy. Life was good. Why wasn't I content?



Now, I am not taking responsibility for Greyson's illness. Just the fact that I have indirectly caused the people I love pain. God would have shaped our lives as he saw fit. I truly believe that Nicole and I were met to be Greyson's parents. So logic would dictate that God would have given him to us anyway. Still I must grow - up. I have to accept that I am responsible for choosing to be content and happy. I am reasonable for the happiness of my family.



I told Nicole no.



We can't replace Greyson. We can't take the risk.

I am humbled.

Want other man is so blessed? What have I done to deserve such love from this woman? That she would risk herself, to tempt such pain again?


My path is clear. My goal set. I must finally accept my role as an adult. I can not longer afford to be selfish.



Nicole, the love of my life, deserves more. I love you!





And thank you.

Saturday, September 19, 2009

Growing Pains!



Boy! What a week!



I really thought that I have been handling the loss of our Grey pretty well. But, after sending Nicole off to work twice this week in tears, I decided that I needed to make a change. I dropped my bereavement group and made appointments for just me. I have been having irrational episodes of anger. Anger about what I have been most proud of, telling Grey it was okay to leave. To not struggle. To not be scared.

I hate myself now.


I don't know what I was thinking.

The only thing that makes sense to me is that I miss Greyson and I want to hold him again.

The old tattered T-shirt of my grief has settled in again. The familiarity of it is almost comforting. The snug, tight caress of it over- whelming.

My grief councilor assures me that what I am experiencing is normal, that grief comes in tides.



I just feel like I'm CRAZY!




Seth has been busting at the seams all week. One of his friends invited him to spend the night this weekend. It is good to see my boys having good experiences in making friends. He and his buddy have been planning what they will do all week. For those of you who don't know, Seth is our vocal child. He never stops talking. So he has done more that his share of carrying on all week. Almost to the point of annoyance. I love seeing him excited, happy.


Not all is well and good though.


Riley is the typical little brother. He idolizes Seth. His big brother is the COOLEST EVER!


He has gotten swept up in Seth's excitement. I have been anticipating the moment that he realizes that he not going to go with Seth over to his friend's house. That is going to be tough. It makes my heart hurt.


I so want to spare him that disappointment and rejection.


We ended up getting the boys new bikes. Not Luke, just Seth and Riley. When we went to the storage area that we have to get Seth's bike out, I couldn't find it! It wasn't there! I don't know if it got stolen, or I gave it away, or what happened. All I know is that it's gone. Well, this is a disaster! Seth and Teddy HAVE to ride their bikes! Seth can't go without his bike. Of course, Riley must have a bike too!


Nicole really stepped up! She, after just getting home from work, turned around and went back to town to get the boy's new bikes. Riley has to get one too! Inside, I cringed! Knowing what Riley is thinking and assuming.


Nicole calls me at work today and tells me that the boys have been up for hours practicing on their bikes. She said that they have been so cute! Seth has helped Riley and been such a big boy.


I could tell by the tone of her voice, that there was a but,





"Riley is really disappointed. He figured out that Seth is going to Teddie's by himself. He is breaking my heart! He won't stop crying."


Oh! Man! growing pains suck!


I hate to disappoint Riley, but I can't force Seth to take his "little brother" with him. Can I?


Nope. That wouldn't be fair. I so want to not disappoint Riley though.





Growing Pains!





I hope that they will not let them affect their relationship with each other.

Saturday, September 12, 2009

I'm Not The Only One












Riley James Morris is our 6 year old.








I knew from the very beginning that he was special, it just took 6 years to understand how special he truly is. I love all of my boys completely and with all my heart. But as parents, we have unique relationships with each of our children. It is just natural.

6 years ago, we had just Luke and Seth. I had begun to work nights and weekends so that we could keep Seth out of daycare because of his special diet. We didn't want any accidents to happen and him to get a hold of foods that he can't have because of his PKU.

A very curious thing happened. I had not really been overly excited to be a stay at home Dad, but I had discovered that I really enjoyed the extra time with the boys. So, on a whim, a sudden moment of inspiration, I decided that we needed to have another baby. We knew about the risks of having another baby with PKU, but we decided that we needed to try and pray for the best. Besides, the baby could live a very healthy life with PKU.



Fast forward to December of 2007. We were having another baby. Again it was me wanting another and talking Nicole (wasn't hard) into doing the whole baby thing all over. Riley was ecstatic! Neither of the other boys had ever been so PUMPED about becoming a big brother. Riley just could not wait. He was amazing. When we were expecting Greyson, Riley was only 4 1/2 years old. He was a huge help to his Mommy and would watch me talking to Nicole's tummy and do it also. It was so precious and cool! (can't call a boy precious! Shh!) I had not a doubt that Riley was going to make the best big brother in the history of big brothers! He helped put the baby furniture together, helped Mommy paint the room, read books to Mommies tummy and, for a 4 year old was really quite patient about needing to wait for the baby to grow inside Mommy.


Nicole and I have talked about the things that were different for us while we were expecting Greyson. At the time we didn't understand our worries, after all we had 3 beautiful boys and PKU is manageable. Still, we had serious conversations about how we would care for a seriously ill child and what our limits would be as to insuring a certain quality of life for such a child. I just told myself it was because Nicole and I were getting older, more mature and approaching having another child the way that we should have approached having all of our children. We definitely had a much different sense of urgency and need to get things taken care of for Greyson and this urgency carried on after he was born. Nicole seem possessed. She was in a hurry for everything, starting Cereal, sitting in his highchair, getting him baptized, all of it. Try as I might, I couldn't calm her and convince her that we could slow down and enjoy. She always said, "We need to get this ____ done, that way he is really ours. We get to keep him!"



Riley must have picked up on this intensity also. He was totally devoted to his little brother. He would sit and do anything that he could think of to make Greyson smile or laugh. He would talk to him incessantly and would be instantly at Grey's side when he would start to fuss. Greyson returned Riley's love in kind. He would crane his neck to see his big brother and wait in anticipation for him to show him attention. Those of you that know us is aware that Nicole is a huge Dave Matthews Band Fan. You might know that so is Riley and Greyson was quickly following suit. When listening to music, Riley is always singing, dancing or carrying on is some way. Greyson loved this about Riley, because Riley would include him in the fun. When Greyson started to lose the ability to move, Riley was undaunted by this, he did the dancing for both of them. He would grab Greyson's arm and move them to the music. When Riley wasn't around you could see how much Greyson loved this because when a song that he and Riley would dance to would come on the radio, Greyson would stiffen in anticipation of dancing with brother.







How Greyson loved his big brothers. They were superheros to him, all of them. He adored each of them. I miss the connection between Riley and Greyson the most though. I think is is because of the fact that Riley was so proud to finally be a big brother.


I remember that shortly after Greyson died, I was holding Riley on my lap and was drying him after his bath.

Riley was very quite and suddenly, sadly, said, "I'm not a big brother anymore. I'm a baby brother again." My heart screaming, I managed to hug him and whisper, "Riley boy, you have always been a little brother and you will always be a big brother."

Riley sat quietly and seemed to think it over, "Even though Grey is in heaven?"
I choked out my reply, "He's still your little brother, even in heaven. And someday, after you have lived your life you will get to see Greyson again."


I have been amazed on several occasions, Riley's ability to express his grief, confront it and then dismiss it. This was one of those times. He reached up, hugged me, and whispered, "I miss him too Dad." Then he jumped off of my lap, "can I watch cartoons until bed?"


The next weekend, after we had come home from Greyson's memorial service, I set Grey's little blue block urn down on the coffee table. Riley placed his hand on top of it and asked, "Dad, what is this?" Nicole and I took a deep breath and explained to Riley that it was what was left of Greyson's body inside. Riley asked, "So Greyson is home?" After Nicole told him yes, Riley grabbed the urn and ran to Luke and Seth, "GUYS! Guys! Grey is home! Grey is home! I am still a big brother!" I smiled. Riley had just answered all of the questions from my family (Parents, sisters) about why we opted to have Greyson cremated. Greyson belongs at home with us. Not in some graveyard.


Inside though, my heart was weeping, my poor boys. My poor Seth, my poor Riley. Luke had known throughout Greyson's illness how sick he was, being 14, Nicole and I had decided to trust him and include him in protecting the younger boys from the stress and worry about Greyson. He had done nothing but impress me with his poise and thoughtfulness. How my boys have been forced to grow up in a way that no child should ever have to. No child should ever have to confront the death of a sibling. Children are supposed to believe that they are indestructible. It is an important developmental stage. It allows children to have the spirit of explorers and pioneers early in life. I worry that they have lost this and will be forever affected by Greyson's death.





Our Little Men. I wish that I could spare you this heartache.

9 Months Today. A Story About Our Grey....




It has come.


Today it is exactly 9 months since we lost our beautiful baby boy Greyson William Morris. He would be 6 days away from being 21 months old. It is hard to believe.


Nicole and I have been having a bit of a rough patch.... Well, okay I have been having a rough patch and Nicole has had to suffer along with me. It just gets so hard sometimes.

I have decided that, instead of wallowing in my grief today, I am going to try a new tack. I am going to share our Greyson with all of you. Let those of you that didn't get to meet him get a glimpse of how amazing he was.


I had forgotten about this. Nicole and I were sitting together at the dinner table after the boys had finished their dinners and asked to be excused. We were talking about our days and just spending a few moments together before the next "Mom, or HeyDad!" was uttered. It wasn't long before our conversation turned to the subject of Greyson. I was telling her about a conversation that I had at my dentist appointment.


The subject of God had come up and I found myself talking to this friend about how I know that God exists. Despite the fact that he took our boy, I have no doubts that he exists. It is because I watched the spirit that made Greyson who he was leave his body in my arms when he died. Greyson's spirit was so powerful and bright that you really didn't notice that fact that he was sick. He just didn't look that sick, at least to me. After he died, he just didn't look like my little boy. He looked frail, so SICK.


This is how I now have no doubts that God exists. I have seen the effects of the indomitable human spirit shining out of the most broken of bodies.


Anyway, I got side tracked there. This conversation led Nicole and I to start talking about Greyson's spirit. How he was always so happy, even though Krabbes causes increased fussiness, Grey would only succumb to it rarely until the very end. Nicole, her eyes glistening, and tears welling up, reminded me of moments that I had nearly forgotten.




Greyson, like all newborns spent a lot of time in his bouncy chair, (a reclining seat that bounces) to protect his neck while he developed his head control. Before he started really showing signs that he was ill, at about 5 1/2 to 6 months old, he had gotten enough head control that we started putting him into his highchair for meals. Man OH Man! Was he proud of himself! He just thought that he was BIG STUFF! He would sit there, smiling and playing with us, saying "NO, NO" and shaking his head. When he thought that we weren't paying the proper amount of attention, he would slap the tray top to say "Hey! Over here!!" Look at me guys!


Even now, while I write this, I am smiling. We had some really wonderful times together with him sitting in that highchair. He and I would spend our mornings after Mommy and brothers went to school, talking and playing, smiling and loving life.


Happy times. My most favorite picture that I took of Greyson was in this chair. I call it "Syrup".


The picture shows how alive and bright Greyson was. He loved to eat waffles for breakfast, well, suck the syrup from the waffles anyway. When I took the picture, I was teasing Grey, telling him that he better not spit out the waffle. (He loved the suck out the syrup and then spit the waffle, minus the syrup, out.) The picture captured the beauty of Grey's spirit and smile.






9 Months....



I wonder if they have syrup in heaven?




I Love YOU Big Stuff!

Thursday, September 10, 2009

Grey, Grey. A Letter From Daddy.


Grey, Grey,


I just found out that last Friday, another little boy named Ethan joined you in heaven. Daddy didn't know Ethan, and he died of another disease called Gaucher's, but that doesn't really matter. Take him under your wing Grey and show him how to play and be happy. Help his Daddy to be strong as you helped me and let him know that everything happens as God means it too.

I Love and miss you Grey. I still need your help to be strong, it is so hard.

Yesterday Daddy went to the dentist's office. I saw people who I haven't had a chance to talk too since your benefit. It touches my heart that you have affected so many people. The kindness that our friends show Daddy by listening and shedding a tear helps make it hurt a tiny bit less, and even that is a relief.

Mommy and your big brothers, miss you and love you so much. I know that you check on them often. You know, Mommy and I had to make a new rule that they had to ask Mommy or Daddy to get your urn down from the mantel because we got worried by them taking it down so much. I have seen them have you sit with them to watch a movie, and I found it in bed with big brother Riley the other night. You are so loved.


Kisses Grey, Grey! I love you!

Tuesday, September 8, 2009

A Boy's Day Out!




Yesterday was Labor Day. The last hoorah for the summer, and the signal that the serious business of the school year is at hand. Those of you that are or have a spouse that is a teacher understand the meaning of my statement. No more truly lazy days until the Christmas break, just lesson plans, meetings, homework and bedtimes for school days. In my case, this means coming home after working a night shift to help wake the boys and coax them into getting ready in time to not be late for school, or going to pick the boys up after school because Nicole has to stay late for a meeting.


In all though, I can't complain.


I will tell you, after working 32 hours over the weekend, the last thing that sounds fun to me is making plans for an outing on Monday. I'm fried from the long shifts and sleep deprived due to having to function during the day and sleep at night. Nicole, was not having any of that.

My darling wife was on a mission. WE were going to do something with the boys this Labor Day. (I really think that it had more to do with trying to snap me out of my funk) "We need to do something cool."

I have to hand it to Nicole. She knows what will peek the boys and I's interest. I love history. Seth has gotten bitten by the same bug. I can lose myself for hours in a museum. I just have to read everything and see every exhibit. The boys aren't quite as committed to the details, but they love to see the antiques and the weapons. And if the exhibits are about a war or battle, so much the better. They LOVE IT! Well, it was decided by the time that I got home after my weekend, that we were going to see the Alamo. The boys were super excited. Now I haven't been to the Alamo in at least 12 years, so I was game. Once I managed to wake up, that is....


What fun! The boys were so well behaved. I say boys, not all of the boys, just Seth and Riley. Luke, I am finding, as a 14 year old, can't be seen with the likes of Mom, Dad an brothers. I am having a lot of trouble with this. It's as if we are a family of 4.

4.





It turns out, that the program "Haunted Histories" that Nicole and the boys watch on Sunday's just happened to have San Antonio and the features city. I had to ask Nicole why I noticed the boys looking around the Alamo in a worried manner. "They are on the look out for the ghosts of the Alamo" she whispered and smiled. The show had spoken of the stories of the defenders of the Alamo haunting the Texas Shrine. What a HOOT! We were outside getting ready to go, when a nice man in a "Texican" costume approached us. It seems that one of the businesses on the grounds of the battlefield had done an archaeological dig on their property and had decided to turn their business into a mini-museum complete with a scale model of the Alamo as it was in 1836. He was advertising the museum dressed like a Texan of 1836, complete with a Bowie knife. I asked if the boys could take a picture with him, you should have seen Riley's face when the gentleman pulled out his Bowie Knife for the picture! It was priceless!

All in all, a very enjoyable, inexpensive outing! Good job Nicole!

I think that the thing that I find the hardest about losing Greyson is the "what ifs". I found myself thinking of Grey constantly. Nicole was too. I knew she was when, in the gift shop, she mentioned to me that we needed to find a Star tree ornament for the Christmas tree. I have been lost since the start of the school year. Stupidly, I thought that I have been concealing this fact from Nicole. I really believed that I was keeping it together for the most part.

WRONG!


After we got home, I happened to mention to Nicole that she hasn't been as affectionate as she is usually. I should have not said that! She has been very upset that I haven't been able to find my way out the "funk" that I have been in since we got back from going to Buffalo, NY. She said that I have been irritable, snapping at her and the boys, no fun, not smiling, unable to get anything done to help out at the house, etc, etc. And if I was wanting affection, should snap out of it and be "normal" so that I encourage affection........



Again.



I have been neglecting the things that are most important. Leaving the woman that I love alone to hold the wolves at bay. I have abandoned her and the boys. I have made things worse for myself and the ones I love.


Boy. I need to man up and give Nicole and the boys what they need, me. Not sad me, happy, loving me. Help me Greyson, I can't remember how to be happy, how to breath without pain.




Saturday, September 5, 2009

Wrapping My Mind Around It....


It is approaching.

It is only 7 days away.


I can't seem to get my mind wrapped around it. I have never been one of those people that dreads a particular day of the week, month or year. I never gave it much thought. In the past I have always found myself shaking my head at people complaining about the day that they hate.

I'm not shaking my head anymore. Every month, on the 12th day, I relive hell on earth. I dread it's coming, and once here, I don't want it to pass. It's going to be 9 months this time. SHIT! 9 months.


I keep trying to tell myself lately that I just need to force my mind to see it another way. I need to remind myself how Greyson would be suffering if he was still here. That his smiles would be gone by now and he wouldn't be able to respond to us anymore. His spirit was amazing, but it too would have sub come to the ravages of Krabbes Disease. His spirit could no more have continued to overcome his disease than I could keep him here. Isn't this hole in my heart worth knowing that he died on his terms, still able to smile and give kisses?


Yes.


I have been torturing myself pretty relentlessly lately.

Going over each and every step and action that we took with Greyson, every decision that we made and the results.

And I have come to the same conclusion that I do every time. I would do everything exactly the SAME! I would not change a THING!

I admit, I have cursed myself because of this conclusion. How can I be so selfish as to not want to prevent Greyson's suffering?

I keep coming up with the same answer. I needed him in my life.

I like who I am now because of him.

Yes, I hate hurting!

Yes, I miss him!

Yes, I still cry myself to sleep on occasion.


I have to continue to try to master the lesson that my boy taught me. Living!

Greyson LIVED!

He loved every day that he opened his eyes. He took it for what we adults have forgotten, a blessing!

A gift from God!


I want to learn to look at each day that way..

I want to look at life like Greyson...


I'm flunking out right now, but I will continue to study until I learn the lesson that Greyson taught us all.....


I will learn to live...

Wednesday, September 2, 2009

September 2009! National Newborn Screening Awareness Month


Yesterday was the 1st of September, the day that Greyson's Law officially takes effect. The state department of health still has until September 2010 to fully implement all of the tests and provision of Greyson's Law, but still it was a big milestone in the Morris household. Very significant if not bitter - sweet day.


I passed the day very unceremoniously. I was sleeping. Luke has been home all week this week so far with a bug that he picked up at school. "Aren't the first few weeks of the school week grand?" I don't know if it was the fact that I feel bad today that I slept all day yesterday, (fighting what Luke has) or just me shutting down, but I blew it. And my feeling bad today didn't help me correct it today. I had intended to get Nicole some flowers and a balloon in celebration, but of coarse, didn't. I SUCK~!


I have been fighting a overwhelming feeling of being in limbo right now. I was going to start school this semester, but didn't get all of my money issues into line in time, so that has been postponed until nest semester. I am very anxiously awaiting a call from the Texas Health Commissioner's Office asking me to be a part of the Advisory Committee on Newborn Screening, but nothing yet. So here I sit feeling like I am adrift.... I need to get off my butt! I do have much to do. I need to get a planning committee together for the fundraising walk that we want to have on the 1 year anniversary of Grey's death.


Needless to say, I have a lot that I want to accomplish. All I need is to get started.

Saturday, August 29, 2009

Grief is Like a Storm


You know, I have been getting a little discouraged here lately. Nicole and I had a wonderful time at the symposium and made some lifetime friends. People which, I can really see having a friendship with for the next 30 years. I was really in a good place in terms of my grief while we were there. Even the following 2 weeks went well. I was comfortable with Greyson being on my mind, but not occupying my every thought. I was functioning and making plans on what to do for the next few months and how Nicole and I are going to tackle organizing our first fundraiser on Dec. 12, 2009. The one year anniversary of Greyson's death.

This week, everything changed. Not matter how hard I try, no matter how much I think about the good times and the fact that I wouldn't want Greyson to suffer the ravages of Krabbes Disease, I feel unsettled. I feel lost on the ocean.


Adrift.


I know that I love all of my children, I have never doubted this. With Greyson, I love him just as I do the other boys, but it is different. I have never been uncomfortable about letting the boys explore and wander away from me. Knowing that they will always return. With Greyson, I could never bear to leave him. I took more days off to spend with him than I have for all that other boys put together, and this was before we knew that he was sick.

My grief councilor has told me that the reason I was so attentive to Greyson was because in my heart I knew that we were going to loose him.

I am lost in a ocean of grief. I have no way to navigate. I am just floating out there lost in this endless ocean. I feel like a sailor lost in the Bermuda Triangle, every time that the storm seems to be abating, the wind and rain tear at my clothes. Though there are periods of calm, but there is always more rain and wind.

Friday, August 28, 2009

Unconditional Love....

I will admit it freely. I am very broken and I have been going to grief counseling pretty much since Greyson died.


Growing up, I never thought much about the whole grief and living thing. You know, when your a kid, the only people that die are grandparents, and they are, just expected to at some point. My parents always approached it as, "Yes it is sad for us that Nonnie is up in heaven, but she lived a full life and she was very old and, it was her time to go to heaven." The logic and natural order of life was just, ...... reassuring and, natural. I was sad, but happy for my grandparent because, they had been ill, no more pain, no more fighting the fight. They had earned their rest.


Death was a natural part of life.


How innocent! How perfect! I never realized how sheltered and protected I was as an child growing up. I never had to experience the lose of a parent or a sibling. No one that I loved had their life cut short. I never had to experience a TRAGIC death, I was untouched by tragedy.

I feel that I have failed as a parent. My boys have lost the innocence of their life. They have felt tragedy. They now know that death can visit anyone of us at anytime, the fragility that is life. Luke, Seth and Riley have been robbed!


In grief counseling today, I finally told my group what I have come to believe since our returning from the Hunter's Hope Symposium in Buffalo, NY. I have told myself and I think that I blogged about it once...

Greyson was love. His spirit just radiated love. Love of life, love of waking up each morning, love of family, love for ...... me.

I thought back about each and every time that I would walk in the door after working the night shift and Greyson would literally shake in anticipation when he saw me. Because nothing worked, he would become stiff and smile the most beautiful smile that I have ever seen. There he was, unable to move, unable to play and he was happy because I was there. I would pick him up and everything was perfect in the world. He was happy and content. We were attached.

I have come to the realization that Greyson was not giving to us without reward. Yes, his love for me, Nicole and his brothers and his Nana, was great and given freely.


But we.


We.


We were filling him up with our complete acceptance, our love of him just as he was. He was able to give to us unconditional love because we loved him unconditionally. Without regret or remorse. WE LOVED HIM!


Attached is a picture that has become very special to me. At first, I wasn't very thrilled with this picture, It was taken at my 40th birthday only 2 weeks before we lost Grey. In it you can see that Grey was getting much weaker. But his smile and love are strong and bright as ever. To me, the name Greyson has come to mean, a shooting star of love.....

Wednesday, August 26, 2009

Reality Just Stinks!




Monday was the first day of school for the boys. Riley and Seth were so excited. Luke was the calm, old pro and to his credit was very patient with his younger bothers and their very loud and overwhelming enthusiasm.


Good Job Luke! You make me so proud.


I feel guilty though. Maybe that is why I haven't blogged about it until today. I forced myself to wear a smile and to be excited, but in truth, my heart was struggling mightily just to function. It all came crashing in on me again.


Firsts....

A lifetime of firsts unfulfilled.

It all seems as a dream. My arms ache and barely remember what it was to hold him. No first step. No first day of school, ever! My poor little boy! I couldn't protect you. How I wish I could have. I would have given my life to spare you what you had to endure.

I never understood the human capacity to dwell on things. I have been around death and the dying in my career on several occasions. I always wondered about some peoples tendencies to wind up stuck after the death of a loved one.


I get it now!


I love all of my children. This is a unalterable Truth. Nothing will ever change this fact. I worry sometimes that I become too overwhelmed by my feelings of grief. I wish that I could be more like Riley. I have lost count of the times that he and I have been hanging out and He will suddenly put his head on my heart and say,

"I miss Grey."

This always wrenches my heart. I ache for the realization that Grey wasn't the only one of my children that I could not protect, my children have had their innocence ripped from them.

It always lasts only for moments, and then, Riley will jump up and say,

"Love you Dad! I'm going to go play!"

Wow! Just like that he has processed his grief, recognized it and moved onto something else. The strength of children has always shocked me. Grey showed it. Riley and Luke and Seth are shining examples of it. Each of them grieves Greyson's loss in his own way, but they also have the ability to let that grief go and continued to live. We adults could learn from their example.

Saturday, August 22, 2009


Sweet dreams my darling family. I love you so much.
Greyson, if you are able, I would love you to visit daddy in his dreams tonight. Daddy loves you.

My Head is Swimming!



I haven't blogged in weeks.




I think the last time I even thought about it was late one night at work; not always my best of times, my thoughts very susceptible to despair and grief. I distinctly remember feeling a growing apprehension about the up coming Hunter's Hope Family Symposium. What kind of people were we going to meet, would my grief and newness to loss make me unable to handle my emotions? Would we fit in? The rapidity of Greyson's disease progression made many of the choices we had to make painful and stressful. Would the other parents at the Symposium understand and except our decisions and respect them in regards to choosing to not prolong Greyson's life?


We were also flying out to Buffalo, NY on the dreaded 12th of the month. Exactly 8 months to the day since our sweet boy left us. I have never placed much stock in superstitions or "bad days" per sae, but the 12th of each month is a very difficult day for me, my thoughts never far from Greyson, my eyes forever flitting back to the clock to see if it is yet 2:08 pm.




That is not to say that I was dreading our trip. I must admit, I found myself actually excited at times. I have been feeling increasingly secluded, not wanting to burden Nicole, my best friend, my confidante with my despair and grief. She has so much of her own to handle. I just don't feel right unloading my crap onto her. I know! I know! I need someone to confide in too. Someone that will just listen and be a sympathetic ear for me to get rid of the poison that comes from grief. Nicole has told me before that she worries about me, because my work cuts me off from others. My only contacts besides her and the boys are my clients, and I definitely DO NOT need to be sharing my grief with them. Many of them are dealing with their own stresses. I am to provide respite for them, not weigh them down with my problems. I must admit, I do not have any close, close friends, at least not the kind that I would be able to lean on for support. This is not to say that I am short on people that care for me and want to help me. I am hard to get to know and I have grown over the years apart from all of my personal friends. Besides family, all of my friends were Nicole's friends first.... I feel that she should take priority with them over me.


No one really ever asks me how I am doing anymore. My sisters have stopped calling and are busy with their families. Nicole has enough to deal with. My best friends have disappeared or are too busy with their lives. I have never made friends easily. I do feel that I need to make it clear that I do not want to hurt any one's feelings. So many people have been nothing but wonderful to me and my family.


I just don't feel like I have access to someone with whom I can completely open and blunt with. I want to be able to rant, rave, scream, be angry at God and swear and not have the person that I am sharing my feelings with commit me to a loony bin or run away in terror. Nicole can not give me that right now. No grieving Mother could. Let's face it, I grew up in a house filled with and run by women. I shock many other men with how comfortable I am facing my feelings and emotions head on. I had a gay man that knew me once tell me that emotionally I was also a gay man. WHAT THE HELL IS THAT?!? Because I don't wall off my feelings, and am straight, I am weird?


I have been trying group counseling, but it just isn't working for me. How do I make another grieving father understand that I lost my bud, my baby, my sweet little boy that loved me completely and unconditionally, when they have never experienced such love? Greyson loved me just as me, and I loved him just the way he was no matter what. He was love.




I am lost without him... I miss holding that love in my arms and feeling him snuggle in and melt into me, gaining safety and security from me.




The good news is that Nicole and I found ourselves taken in as family at the symposium and it was nice being around people that just know and understand where we are and what we have experienced. I really thought that I might have made a connection with a couple of other father's there, that remains to be seen.




Grey,




I love and miss you son. Each and every day I am more and more proud of the job you did teaching me my role in this world and showing me the path that I have and the work I need to finish. Words will never do what I feel justice.




Love,


Ah! Da!


This is Nicole and I with Jim Kelly and his Mother -in- law Jacque Waggner. We have given them a symbol of Greyson's Law in Texas.

Saturday, August 8, 2009

Here we are. Another night of going to bed by myself.
Now I lay me down to sleep, I pray my Grey a visit in my dreams to make, and if I die before I wake, I pray the Lord my soul to take to be with my Darling Greyson forever, this is the plead I make!
God bless Nicole, Seth, Riley, Luke and Nana for I love them so.
Amen.

Goodnight Grey, Grey. I love you!

Friday, August 7, 2009

It is the very wee hours of the morning. I have just finished a night of work, long lonely hours spent, my mind free to wander freely through memories. These times are especially hard for me, though I try to distract myself, it just doesn't work. Grey's death always seems more real this time of day. The Depth of my missing him endless, my heart more empty. I find myself harder pressed to remember the blessings that I still enjoy. My sadness overwhelming.
Oh Grey! Daddy misses you!
Play hard and fly high little man!

Saturday, July 18, 2009

To Blog or Not to Blog?


When I started blogging, it was more of a form of release than anything else. A way to express my feelings, to myself more that anyone else. There were days that I blogged 2 or 3 times a day. I guess that means that I'm starting to deal with Greyson's death better. I wonder?



As I am sure you know, I have begun to blog less and less. Sometimes I wonder if I should continue? Am I wasting my time?

I guess that the answer to that question is relative. Obviously. So here I go again, trying my best to sift through all of my feelings to figure out which, if any are important. I am amazed that there are so many that rattle around in my head. It is really quite crowded in there.

The past weeks have been very eventful. Nicole and I, along with Senator Carlos Uresti, appeared on the SA Living show on Channel 4 WOAI on Thursday, July 16, 2009. We were trying to get some of the information about Greyson's Law out to everyone in the San Antonio area. It went really well.

To see it go to:








I am so proud of Greyson! His Legacy will live forever. In his short 11 & 1/2 months, Greyson has touched more people than I ever thought possible. His spirit was amazing. Despite his illness, people were drawn to him. The glow of his love for life and his family blinded others to the serious nature of the disease that was destroying his body.


Nicole and I received copies of his medical records that I had requested from Greyson's Neurologist. I was struck by the fact that I too, a trained nurse, had been blinded by his spirit as to how many serious, ominous symptoms that our sweet boy was exhibiting. I remember being shocked and devastated when we got the news that Grey was terminal. In my 13 years of nursing, I have been struck by the number of times that the families of terminally ill people act as if they had no idea of how sick their loved one was. I get it now. Our love for our ill loved one blinds us to the degree of the illness. I don't see this as selfishness anymore, but as a safety measure to allow the family members to continue to function as caregivers. Without this safety measure, Nicole and I would have been crippled and paralyzed, unable to do the little daily activities that Greyson so loved. Nap times, meals, baths, and just snuggling him would have become incredibly hard.


As I sat reading each of the assessments in order, I realized that I had noticed many of the ominous signs, but my devotion to my son immediately put up a wall. I needed for him to have a chance, I had to have hope for his sake. If I had not, I would have been unable to do anything but sit and hold him, dreading what was to come next. That would have destroyed not only me, my family, but it would have killed Greyson's spirit too. And that spirit never surrendered.


On the Wednesday night of that last week, Greyson had been having a very difficult time. The degeneration of the Myelin Sheath of his nerves had progressed to the point that we had to give him sedatives to keep him calm and relaxed so that he wouldn't hyperventilate. The most difficult thing was that the sedatives made his personality disappear. Nicole and I, earlier in the week, despate to seen our baby smile and react to us had tried to back off of the sedatives, and it had been terrible for Greyson. He had struggled to regulate his breathing and had been overtaken by a terrible symptom of Krabbes, a Neuropathic Cry. He was totally inconsolable. No matter what we tried, we could not calm him. So we had gone back up on the sedatives. Grey was doing well. That Wednesday night, I was giving Greyson his bath. We were keeping his routine as normal as possible, doing all of the things that we had always done. Nicole couldn't bear it. It was awful. At this time, Greyson had stopped eating or drinking for 3 days. A normal part of the dying process, his body was drawn and he had lost weight. So I was giving baths. Greyson had always loved bath time, looking back it was probably because the warm water soothed his inflamed nerves.


I was babbling like an idiot, like I always do when bathing the kids, when all of a sudden, Greyson opened his eyes and looked up at me. I instantly knew that he had come out of the fog of the drugs, and was aware of were he was and of me... He smiled, the most beautiful, loving smile. My heart stopped. "Hey! Grey-Grey! Daddy loves you!" That was all that I could think to say.

My darling baby boy, Greyson William Morris, smiled at me again and gave me not one, but three of the sweetest open-mouthed kisses I have ever been given in my life. We finished his bath and he succumbed to the drugs once again. That was the last time that I basked the the glow of Greyson spirit, and I will always cherish this memory. He was letting me know that he was okay. He knew that Nicole and I loved him and always would. With that smile and those precious kisses he told me that we were doing that right things and that he was going to be okay.

As I write this I am overwhelmed by the effect that Greyson has had on me as a man, a father, and a husband. I will never be the man that I was before. I am reborn because of Greyson. I am struggling to not waste the knowledge of the precious nature of life. To be worthy of the completely pure and unconditional love that I have been blessed with though Greyson.


I will spend my life trying to live up to the blessing that God gave me.

And so I continue to Blog....