Bad Day

Today has just been a bad day all the way around. Initially things were just as "normal" as can be right now. The phone rang and it was the lady from the SIDS foundation again. I know she means well but lord it sometimes makes it worse when they call you. You could be fine and having a good moment when wham...it hits you like a brick wall that life as you knew it was yet again brought to a screeching hault. She said they are still waiting on the results from the toxicology report and that they keep close contact with the medical examiners office. We have been told by a million different agancies that we will be called the moment the results come in. I know they will show nothing and he will have a finalized death certificate stating SIDS. Part of me will be happy to have a finalization and the other part just dreads it.

That whole thing kind of sent both Hugh and I into a spiral of emotions and moments of missing our man. His picture is above our fire place and just looking at it sometimes makes our hearts ache. I went into his room and just stood there missing him. It is just such a terrible feeling I wish I didn't have to know.

My friend from Germany called me today. I always enjoy talking to her. No matter how much time goes by it is as if none has gone by an I can always be up front with her. She asked me how things were going. I told her it sucked and that we were having a bad day. It sucks that my son is gone an there is nothing I can do about it. She totally understood and just let me be sad and miss him an it was ok.

I have had two emails from friends that read my post yesterday about God only giving you what you can handle. Both of them had similar takes on the phrase. In the general overview, it is ok to be sad and week but God will not leave you whlie you go through this rather then you having to hold it all together. Right now I just don't want to have it together and I don't want to be strong. I'm so sick of being strong and it is ok to know that it is alright for me not to be. Yes I know I have the other kids and by no means am I about to disreguard their needs but shy of providing that, I just want to "be" right now.

I am sad that my son is dead and I miss him with all that I am and that is ok right now. It is when I feel like I have to have it all together all the time that it is hard because I fell as if I am letting others down. Hugh feels very much the same way. From the beginning we have beeen told by many to "be strong". I've come to hate that phrase. We are strong, we are getting up each day and living and that is strong for right now. It is as if it is a sin to be weak in some wierd way. Each day we are able to do more but there are days, like today, where we find things to be hard and I have finally allowed myself to not feel guilty for not having it together all the time and having my moments of weekness.

Of course things only got worse from there. I got a call from the state about Joshua's medicaid. It took me 3 years to get it and to set up his trust fund so it would not affect his eligibility. Well dispite all my efforts it was just my luck that it has become an issue. Apparently the trust fund is not written to their standards. I now have to get a hold of the lawyer who wrote it and get them to rewrite it. As of the way it stands now, he will no longer have insurance as of March 31st unless I can get this all situated. I really just did not need this now. It kills me that I do things the way they are suppose to be done and still have issues. I've watched as others don't have these issues and use the system and they get whatever they want and it truly burns me up! Those are the people who make it difficult for people like me and that makes me so mad. We have a call into the lawyer and the lady from Medicaid sending me a check list of things that need to be adressed in the trust. I could really not have this added to things right now but it is just my luck.

Tomorrow Richard, his dad, and I are going to Rutgers. We are participating in a study for Tourretts Syndrome. There were these books we had to fill out with tons of questions. We will have an interview with the physician running the research and also blood draws. They are going to be holding the things they collect at Rutgers for international use and study of the disorder. I've also found a similar study being done with Mito out at the Mayo Clinic. I contacted them to see what they will need for their study.

If people like us don't help with these things then they will never get anywhere with it. There is nothing invasive one with these studys and they are usually only a one time thing so I figure it can't hurt and can maybe save another parent the torture and things we have gone through to get the kids diagnosed and the proper care or just a better understanding of why there is such variations within the disease. No we are not obsessed with it by any means but if we all ignored the fact there needs to be more done then nothing would ever happen and those yet undiagnosed would continue to live the hell of this disease with no hope in sight. I know for people like me who find this pertinent, it is as if there is something good coming of a bad situation.

I'm hoping for a better day tomorrow. Hopefully by the end of the day tomorrow I will be able to have links to the baby's service up and running for anyone who wants to watch it and did not get to go. There has been a few snags with that so it is taking longer then initially expected. It was so beautiful and I was so greatful to have been able to make it so special for our little man.

I miss you my little monkey!