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.


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!"


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.


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.


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.


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........


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?


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.