8 Weeks and a Finalized Autopsy

What a VERY LONG DAY! There has been a lot going on the past two days. Yesterday was not a horrible day but was full of lots stuff. We said good bye to Michael's developmental teacher. She was also Joshua's so it was hard to see her leave for the last time. I got Michael's evaluation paperwork from school. He will certainly qualify since he fell in the 5% in two areas. I went to bible study and it was a good break from the chaos of the day. When I got home, I was in bed and Richard came to me to tell me he needed to have a costume for the next day's Civil War Ball! We ran to Sears and I spent money I didn't plan to but we got it and I was up sewing his vest.

Earlier in the AM I called the Medical Examiner to see if they had finished his autopsy. They told me it had been done for a week!!! No one could call me? Ugh...I know it isn't their policy but come on! Oh well, I had to fax a letter then it had to go to their legal department and then they were going to mail me out a HIPPA form and then I would have to mail it back and then wait for the paperwork. I was so overwhelmed having to wait but asked if I could go and pick it up. They called me right before they closed to let me know I could come in today to fill out the form and pick it up. I was so thankful.

Hugh said he did not want to go or know anything other then what his cause of death was. I was prepared to go by myself. My mom had asked to go but she was just to close to the situation and I didn't want that since I knew what the report would entail. I was prepared to just go myself until after a conversation with a woman from our church. She had been a social work from DYFS and she convinced me that I needed a third party person to go. She offered to go with me and I was reluctant to say yes but I was not sure how I would handle it if it was not SIDS. I knew that she cared but was not so emotionally involved that I was ok with her going because she had read many autopsy reports and would know what to expect.

I got up early this morning to help Richard get dressed for his ball since he had to come already dressed. Then I got myself together and the anxiety mounted as the time neared that Marsha was suppose to pick me up. As soon as I saw her care I was out the door and we were headed to the medical examiner's office. I filled out the paperwork and almost had to wait until Monday due to someone in the legal department taking the day off. Thankfully they had compassion and gave me the report. I didn't bother to read anything but the finalized death certificate wich listed his death as "sudden unexplained infant death" It meant they had no answers. I flipped through the report not reading everything but just scanned it.

Marsha took me to get coffee and we went through it a little more but she read it more then I did at that point. I just wanted to know initially if they found anything. Hugh was waiting so I called him and told him it was what I had suspected would be listed. There were some things I had come across in my initial preusal that I knew I would have to look up so I didn't want to go further into it without a way to look it all up. We finished breakfast and headed home where she dropped me off.

Ironically, I talked to the gentleman at the medical examiners office and told him about the upcoming in service that I am working on at the hospital. He asked me to let him know because he was very interested in attending if possible. I had peaked his interest when we had spoken during my interview with him over the phone reguarding George's birth and life. I was talking to the receptionist when he heard my voice and conversation and realized it was me and said it was nice to put a face to a name and that he was sorry it was under those circumstances. That was when I told him that it was ok and what I was doing with the hospital. That was when he asked me to please tell him because they were very interested there to learn about Mito.

When I got home, I went to my mom's and grabbed the video camera so Hugh and I could go to the ball to see Richard dance. He was wonderful and it was nice to have the break from the emotions that just seemed so overwhelming at the time. I was very proud of him and even got a chance to dance with him. He was much better then I was but it was a lot of fun. We got home and picked the boys up from my mom's. I stayed a little while I waited for Richard and Hugh went to go help with the church hoagie sale prep work for tomorrow. I went home eventually with the kids and began my prep work for Michael's birthday party tomorrow.

We all had a rough emotional afternoon/evening, especially Richard. It was nice to be here all together to be here as we each hurt in our own way. I don't know if having the information was better or worse. Hugh said tonight that he knows the pain won't get better but it can't get worse so that is a possitive thing...I guess?! Just a little while ago I sat down and read through the report from beginning to end. What a horrible thing for any parent to ever have to read. I'm not going to go into details but anyone in the medical field knows what they entail and they are very graphic. I hate the fact that they did that stuff to my baby to just come up with nothing...just like I said it would be! I know there are horrible people out there who do horrible things to their kids that make it such a nightmare for those of us who don't do those things.

Several things jumped out at me and I did have to look up some of the stuff. He happened to have an ear infection...we didn't even know that. It explained the funny thing he was doing that night with his one hand, it was the same side. He showed no signs of an infection and had just gotten over a cold and had been to the doc a few days before. The one thing that kept ringing in my head and was printed throughout the report was that he was a "robust well nourished and apparently well cared for male infant" I cannot tell you the solice I find in that. There is no way to explain why that has meant so much to me but it does...it was obvious to them that he was loved and taken care of and that was so important to me.

The other thing that really meant a lot to me was when I was reading the report. It gave you details of that day. They also noted that someone at the hospital had dressed him! I cannot tell you how much that meant to me. When I left him at the hospital he had a bunch of tubes and Iv's(all of which were noted in the report) in a diaper wrapped in a blanket. We had taken his pajamas home with us. Someone cared enough to dress my little boy for me and I cannot tell you what that means to me to know that he meant so much to others. Even now as I write this I have tears streaming down my face with the very thought of that.

They did run one metaboic test, an acylcarnatine profile. It was ran by the Mayo clinic and came back negative. The funny thing is that none of my boys had an issue in that profile ever! I was not surprised at all other then this is the only test for metabolic issues that they use. Ironically, there was an issue with his liver, lungs, and gastroesaphegeal junction that were enough for them to note in the histiology section. The liver thing is related to a fatty liver issue! It was sparse in it's presence throughout the sampel they had but it was there and has relation to metabolic stuff. Usually it is connected to Reyes Syndrome. They attribute that to use of aspirin but George NEVER had any of that, none of my kids have but it also found in people who have never used it either.

Some of his cultures came back possitive for staff, strep, and HIB. These were found in his spinal fluid, ear, lungs, and blood cultures. There were different strands of them. I'm not 100% sure I am reading that part of it all correctly but I will be getting some help from the SIDS foundation to read it all. I also want to have Ken look at it and see what he thinks of it. At this point I don't know what all the abnormalities add up to but they are things I need to look into and question. I just don't know enough in this area but as always I will find out and educate myself where this is concerned. I just pray to God I never need to know it again. Nothing was significant enough for them to feel he died from it but I still feel the need to look into it a little more until I understand it all.

I feel like I have been hit by a truck right now and am exhausted from the emotions of the day. Tomorrow is Michael's birthday party. We still opted to have it dispite how hard it is going to be. Many times I feel as if I am walking around stuck in this world that does not move yet the world around me keeps spinning. It is such an odd feeling sometimes. Please keep us all in your prayers as we come to terms with these things and try to keep moving forward one small step at a time. I miss my little monkey more then anything in the world right now. We are all having a hard time right now and although it seems like we are fine on the outside most of the time, we are dying inside or just literally going through the motions and barely keeping it together a good portion of the time. 8 weeks have gone by and it is no easier then it was the day he died nor do I ever feel it will be until we are reunited again someday in God's kingdom.

Memorial Quilt

When George died, a woman had offered to make a memorial quilt for our family from his things. We finally sat down and went through his clothes and things to decide what had a lot of meaning to us. We of course sent the outfit he came home from the hospital in, Thanksgiving outfit,Christmas outfit, the last outfit he wore, and many other articles that had some sentimental meaning to them. Hugh finally to them this afternoon to the post office. It kind of made me sad and happy at the same time.

I also emailed her photos of him to add if she feels the urge to do so. It was so hard to sift through all of those pictures of him and look for ones that had touched our hearts. I sent her several to choose from. Ironically, I found my mood changing as I looked at them. When I looked at the ones of him being born I just smiled remembering that day and how wonderful it was to finally have him as part of our family. As I progressed through each folder, I found my heart aching. I got to the final folder that had pictures of him in it and I just started to cry. It just made me so sad to know that he was no longer in any of the new ones.

I've done pretty good the past few days but I cannot tell you how it sort of sneeks up on you and hits you all at once. I miss him so bad. My heart just aches to hold him and although I cope better it doesn't hurt any less. This is the worst feeling in the world. It will be two months on Friday and it seems like it was yesterday or the absolute opposite...an eternity. I think the yesterday feelings come from the memories and the eternity feelings come from the pain you are left with.

Today we said good bye to our first person from Early Intervention, our social worker. Had George still been alive he will would have come to help with the paperwork and logistics of having a special needs child. He has become a part of the family so it was hard. Tomorrow it will be the boys developmental teacher Myra who we absolutely adore and who has watched the boys grow up. Next week it will be Michael's OT Nicole. It is so terrible to have to do this all right now. It is like having to say good bye to family members, they have known our family since Josh was admitted to the program years ago. In some ways we are closer to them then we are family members because they were here each week.

This is all just such a sad time in our lives. I had thought years ago when Richard's dad went to prison, that it was the worst but this is multiplied a million times. Trying to not let it gets to you becomes very hard. The insane things people say to you and trying to find a balance between wanting to punch them in their face and then trying to just be understanding is such a hard task. People you think would know better or should know better make it harder and in some ways I find myself distancing myself from them just so I don't have to endure the confrontations and feelings that come with them.

On an up note, I did call the hospital nurse who I have been working on. THey are all on board and she will have a final date and time for me hopefully by the end of the week. We will be doing the inservice in June and I am quite excited about it. I've contacted a few of the organizations about it to get literature and any other info they may have to aide us in this effort. Once I get their stuff I can sit down and see what we may need and come up with a game plan. It is going to be a good thing but it is just unfortunate that it took George dying to get to this point. I guess it has to start somewhere though.

I contacted the SIDS Foundation yesterday. The week he died they sent me a folder with information on requesting a copy of the autopsy. I have no idea where that is so I asked them to send it to me again. We still have no idea where things stand and I am getting impatient with it all. I want closure for crying out loud this is just torture!!! I'm hoping that we can get an answer soon. We have not heard from the SIDS foundation in about two weeks now...that is the longest stretch since he died. I don't know if I am greatful or sad. The sad comes from the fact that I was hoping that htey would be able to get answers sooner but I guess not since we haven't heard anything. The greatful for the fact it doesn't bring those moments of utter sadness hitting you from a phone call. I can't exactly explain it but I know we can call should we need to but for right now Hugh and I are probably going to attend the grief support group at the hospital that is the second week of the month. I don't know how much it will or won't help but it is worth trying out.

I am working on trying to get Joshua a music therapist or art therapist. He is having a tough time with this all and having a hard time working through his feelings. He cries if you look at him funny or is just plain old defyant. I know a lot comes from George's death because he sat with me the other day and talked about George for about 15 minutes. He keeps bringing him up...I let him talk about him but don't know what else to do for him. All of his behavior stuff started after George died so I definately think it is linked. I was sent an article on children and grief and all of this is normal I just want to make sure that he gets the sort of support that he needs in a way that is going to work for him. Out of all the kids I think he is the one having the most trouble coping.

One day at a time...one moment at a time right now!

Friends and Family

Yesterday we went to church with Richard and Michael. It was a good but emotional visit since it was Michael's first visit since George's service. Richard told Michael that we were going to see George...Michael did not understand that and I forsaw a host of problems in our future. I knew what Richard meant but Michael didn't. We were left to have to try and explain things once we got to church.

We took Michael over to George's grave. He stood there and asked where George was. We pointed to the ground and told him that he was under the dirt. Michael just looked at us puzzled and just kept asking since he didn't understand. Every part of me just wanted to cry standing there trying to explain this and hating the fact that I had to do it. This week was just full of moments I did not want to have but was forced to and right now I surely need a vacation.

I think we did finally explain it enough for him to understand at this point. He still was kind of confused but when we got back to my mom's he said he went to visit George at church so I guess he kind of got it. He had thought a doll on a chair in the toy room was George and once he picked it up he realized it wasn't. I think that may have been when he really understood at least as best as he could.

I was quite greatful to finally watch the recent Disney movie The Princess and the Frog. That is the first movie that has someone die in it. For the first time I have to say I was so greatful for something like that because I think it helped for the kids to understand a bit better. The firefly gets stepped on but finds his place up in the heavens as a star next to the love of his life. You saw them have a funeral for the firefly and the firefly return to heaven! I was so shocked but never more happy to finally see something able to explain things to the boys a bit better.

After church we went to my mom's where Josh was. My uncle happened to be there and he happened to have a dog that he was a foster parent for. The dog's family had droped him off at a store and my uncle told the store owner that he would watch it. I had just started to do the rsearch on dogs and service dogs and how to train them and work with them. She was a little shy at first but once she warmed up to you she was all puppy. She is 4 months old and already house broken(always a huge reason I didn't want a dog.) Richard was just in love with her and she took to him right away. She also took to me. The little boys are a little fast moving so it was harder for her with them.

She was a perfect size, not to big and not to small, and she has a great temperament. I sat there and prayed about it and when Josh turned to me and asked if he could have the dog, I just knew it was meant to be. She came with a $0 price tag which was even more inviting since we don't really have a lot of money to spend. We have taken her home and she did really well last night. She follows Richard and I around and has found comfort in the little boys too. We have to pick a name still and I need to really begin to look into training her. She is very smart and I think she will be a huge help in the healing process of the family.

After I said ok, I had to leave to go to a rehearsal. I am singing with a group of tallented people for a concert and we had a get together that I had to go to. There were a lot of great people there and my sister Tara is in it with me. My friend Maribeth was also there. It was a great way to just get away from the saddness from loosing Goeorge and find peace within myself. Music has always been a huge healer for me.

I find it kind of wierd when you see people for the first time following the loss of your child. People just don't know how to handle things or respond. My friend and I were sitting next to each other when she commented on my earings. I had bought them after George died, they are saphires and have 4 tiny stones. Saphires were George's birthstone and my favorite stone and I got them because of the 4 stones which stood for each of my boys. When she found out she just appologized to me. I told her it was ok but you could tell she was kind of akward with the comment for she did not want to hurt my feelings.

We got done after a great rehearsal and my friend, my sister, and I stayed outside chatting. Both my Tara and Maribeth were very careful as to what they said and talked about in my presence. You could tell that both of them were kind of akward with certain topics, especially children. Finally, Maribeth just asked me outright about Michael's upcoming birthday party. Her son is still young and she was worried about coming to Michael's party because she did not want to upset me.

That is when I just told them that I don't know what will hurt and what won't. I would rather it be with people I am comfortable then those who are strangers. Yes there are going ot be things that make me sad and things that I just cna't do but I still have to live life. Little kids are going to make me sad but they are also going to bring me joy. There has not been a day I have not looked at my own kids and cried because of the pain loosing George has brought and I mourn the loss of my own dreams for him.

I had thought about skipping Michael's party all together but knew I could not do it to him even though he probably won't ever remember it. Dispite my best efforts,I could not justify not having his party for him no matter how hard it was going to be on Hugh and I. There are going to be things that I am just going to be sad with like shopping in the baby section, watching friends whos kids were born around the time George was, baby showers, and all sorts of other things. They are all part of life though and that is what I am living so I will have to learn to cope dispite the pain they cause.

I cannot tell you how greatful that I was that she brought it up rather then not come because of that. Hugh and I appreciate a more forward approach rather then the huge elephant in the room feeling we get majority of the time. We are going to have good and bad times because this is now part of our lives and will be forever. People have said things that hurt but we have learned to know that they mean well or that they just don't really understand and that is ok. We are greatful for our friends and family who have been here for us dispite their own lack of knowledge and understanding. We would not want anyone to know this pain or the aftermath and feelings that go with it.

My sister and I started to talk a little more about it on the way home. She is pregnant so it has been akward for her since she is finding excitement and joy in her life that only carrying your child brings. I know this all to well and don't want to take that from her either. The thing that brought tears to my eyes was when she said that she has thought hard about using George's things. I never wanted to ask her because i know how sensitive she is and how she would want her own things for her baby. Most people don't want hand me downs from a baby that has died. The very thought of that made me sad as I had taken everything out of his closet and drawers this weekend. She told me she had thought hard about it and if she is having a boy she would be happy to take and use George's things. Even now I sit here crying because it has meant so much to me. I cannot explain why but it does.

Hugh and I have already discussed that very thing for ourselves. We both think that we could not really use his things for another baby we could possibly have sometime in the future when we are ready. Seeing another child of ours would be extrmeley hard for both of us because of the memories and the fact we would not want the baby or anyone feel like we are replacing George. We of course don't have to make that decision for a long time but it is something that you think about over and over again as you go through their things. I don't know if we will ever truly be at peace with these sorts of things but I know that we will get through it all no matter what.