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!