Seems Like Yesterday

Our sweet baby left us 12 weeks ago. It seems just like yesterday that I was holding him in my arms and yet it seems like an eternity has gone by if you actually think about that very moment it all happened. It seems as if each week marker holds an obstacle for us on an emotional level and yesterday was no exception. Both Hugh and I had rough moments yesterday.

The two of us went out with Michael. He had a dental appointmnet to check his teeth out. We finally found an awsome dentist for the kids. He will be going into the hospital to have his work done but he was such a good boy. We had told him if he was good he could have McDonalds. He of course didn't forget that and held us to our word so Hugh drove to the closest one. We pulled up to get our order and Hugh pulled forward to be able to get Michael settled. Suddenly he realized the last time he was there and emotion just flooded him. The last time he had been at that particular one was on his way up to the hospital to see me when I had given birth to our little monkey. With that we both just sat there crying. Something so small can evoke such a huge emotional impact.

We went back home since my mom called and told us that George's life insurance policy information had come in. Hugh and I had litterally just added him only a short few days before he earned his wings never expecting to ever collect anything on it. I cant tell you how hard it was to go into my mailbox and pick it up. I didn't even want to open it. Hugh was waiting in the car since we had needed to go buy some basics from the store. I walked over and just stood there crying. It was so bad that the neighbor had asked Hugh if I was alright when I ran inside quickly to get some tissues. The drive to the bank was one of the longest drives ever. It was such a bitter sweet moment. Usually you are happy to get money but we didn't really want this money, we would have rather had our little boy back. We would have given anything to just have him back and not a piece of paper on an envelope.

Hugh went in with me while I deposited it. My hands were shaking as I signed the check and handed it to the girl. I told her that it was a life insurance check for my son who had passed and I needed to know when it would be available because we are very behind on our mortgage. She just looked at me saddly and handed me their breakdown sheet. It will still take almost two weeks to be available but at least we can finally call the mortgage company and tell them we can pay them. They have been udnerstanding(even though it will still show on our credit, but after your child dies you could care less about a stupid number that everyone judges you by) and I wanted to be able to give them a timeframe.

One of the tellers happened to know me because I was her son's cub scout leader. The last time I had seen her, it was at the drive thru and I had passed her pictures of the baby. She turned to Hugh and asked him how the baby was and Josh was. He said Josh was doing well but the baby had died. She just didn't know what to say and felt so bad for asking. I told her to not feel bad, that it is tough but she did nothing wrong in asking. I proceeded to tell her that I want good to come of his life not bad and what our plans are We told her what had happened that day and by the end almost all the indoor tellers were over there listening with tears in their eyes in utter disbelief. None of them knew it was 12 weeks to the day we had said goodbye to our little monkey.

We made our way back to the car to continue with our day still very emtional but with a feeling of finality and helplessness all rolled into one. The money will be enough maybe to just about catch our bills up that have not been paid since almost the time he died, put together his memorial garden, with maybe enough to buy his brothers beds and that is about it. It was odd to look at that check and think, this is what my sons life was worth to this company but to us we would gladly take him back and give that back to them. Hugh and I sat there talking about the irony in it all. The very reality of it all has sunken in harder and harder as each day passes and we have more of these moments.

We still had to do what we were set out to do, go buy some things for the house. It has been extrmely tight for us here with me not working. Then this week I double paid a bill which put us in the negative and whe had to wait 3 days to have any money. It was terrible because we had to pay 3 overdraft fees and I was so mad at myself for making such a stupid mistake!!! It was the second time since George did that I did this.

Lately, it has been getting worse in terms of remembering things. I was actually more together in the immediate weeks following his death then I am now. Our credit cards were maxed between the boys medical bills and the cost of his funeral so we didn't even have that to fall back on. Ironically, I didn't care. I never thought I would ever say that. We had enough to get enough gas in the car and milk for the boys so that was all that mattered for those 3 days. Hugh's unemployment check came in for the week and we used some of that to go get some basics yesterday.

The one card we had a reasonable amount of money on was the Lowes card we have. We don't use it for a lot of stuff. Hugh and I decided that we were going to go there yesterday and use it to begin getting plants for George's garden. By the time the check clears, we can just pay off whatever we spend. I think we both needed somthing happy to do and the availabitiy was there so we just went with it. It had pressed so much on my heart that I didn't care we needed to do, I knew we needed to do this.

Richard had a hard day yesterday and went with us to pick out flowers. I huged him in the store and he just started crying and I told him I was sorry I couldn't take his pain away and that I couldn't fix it. We sat there crying and holding each other in the middle of the isle. Our little truck had a bunch of flowers but we still need quite a few more. We are going with a white, yellow/orange, and blue color scheme. They did not have the blue forget me nots we want to get or the white calla lillies that I want to get so I will have to email the guy from the nursery. Richard and I picked out some beautiful plants and can't wait to see them all in place.

We made our way to check out when an employee asked us if we found everything ok, I said yes and she made a remark about the flowers. I told her they were for our son's memorial garden and he had passed away in Jan. Several of the other shoppers had overheard it and the sympathetic but approving faces surounded us as we walked to the line. People don't really know how to handle it when you say your child died and sometimes you handle it better then they do. I'm not afraid to say that my son died and I am going to talk about it. I've decided that I want to make it part of my mission to make this not such a taboo to talk about. We even bought one of those vinyl stickers for our car that has his name and dates on it.

We are going to have to go back today and get some more plants. I want to get them all now since it is harder to find quality and what you are looking for later on in the season. Hugh began planting some of the flowers/bushes yesterday. It is starting to look good! I had purchased a few angel garden statues and precous moment ones. They are so adorable and are going to really make the whole thing look beautiful. I bought ones that were little boys or boy angels and they are just perfect. It is going to be a huge task but it is going to be well worth it. We may have a dedication once we are done and maybe see if the deacon who was with us at the hospital when he died would help us maybe bless the garden. We have our work cut out for us today as we continue with our work out there.

I woke up this morning when Hugh's alarm went off. For a brief moment I forgot that he was gone. My first instinct was to go check on him. I hate those moments because they are immediately followed by...he is gone. It was one of those mornings that I would have brought him downstairs with me and played with him in my bed. He would have snuggled under my chin and just lay there on my chest content and calm sucking his thumb. God I miss those moments more then anything else. Those moments of quiet where we are just there enjoying one another's presence. It seems like only yesterday we were doing that.

Amazed

The past two days have been a whirlwind of emotions and events. Tuesday has been one of the worst days we have had and yesterday was one of the best. So many things have been going on good and bad. Tuesday Michael broke his tooth, the neighbor called the cops on our dog for barking, and it was generally a very emotional day. I joined a couple of online support groups and am still feeling my way around to see where I fit in. The local Compassionate Friends organization called me back so Hugh and I can look into attending one of their mettings in May.



I was so furious after the cop knocked on my door. It was not during hours that are quiet hours when the dog was out. She is a rescue dog so she is very skittish and barks a lot when outside. A leaf falling from a tree will start her off but she does stop. We are also trying to get her use to staying on the line for a period of time so that she doesn't always have to be stuck inside on nice days. Of course whoever it was(and I have my susp who it was since we have had problems with this neighbor right after our son died and for whatever reason she always starts with Hugh and I. We want to just be left alone to live our lives without her interfearing because she doesn't like us and we just choose not to associate with her.) didn't leave their name. I just don't understand why they just couldn't knock on the door and say the dog is annoying us, can you bring her in. I appologized to the officer for someone wasting his time, There were tons of dogs outside barking all day long and especially during that time period. He even admitted that he hadn't even heard the dog the whole time he was there because all he heard was the dog two doors down!



The people across the street have had numerous issues with us for whatever reason. I have never understood why or what the deal is but if you don't like us that is fine just don't bother us. They have no idea the life that we have to lead and only see and judge us by the very little they know about our lives. I pray for them because we are not the only people that have had issues with them but they put on a good front for everyone who has never had issues with them. It is sad but I also refuse to give into a bully, because that is what they have become to our family. I really feel sorry for them and the people they are, that they have to do this to a family who has had such a hard time in life and just lost their son.


After the cop left, who was none to happy that someone called about something like this, we moved the rest of George's things to my mom's house. It was so hard to do. I stood there in my front yard crying as my brother put his bouncer, swing, and jumper into my dad's truck. The finality of the things that he used every day going away was just so hard to see. It just sunk in even more that my sweet boy is forever gone. It is so terrible to know this is how my life will forever be...without my little boy. I miss him so much every single day and it is not getting any better and I have just come to the conclusion, it isn't.



God has a plan for us all and I keep telling myself that. I don't like what he chose to do with my baby but I have to trust his greater plan. There is this awsome picture I took of George right before he died where he is pointing his finger. I sat there looking at it after another mom who lost her daugter to SIDS made a comment on it on facebook. She said that it looked like he was saying "Can you believe these guys?" Well, I sat there thinking it has got to be the same exact expression he is using when he looks down from heaven. Just sitting there expressing to everyone up there...do you believe them all and what they are doing? I am here and in such a great place. At least that is what I try to tell myself when I question why he took my son. I sat there that night asking God why yet again.


In the morning I had gotten a call from a Dr. at the SIDS foundation. I told him about the questions I had with his autopsy. After much discussion, he told me that he felt we needed to look further into his death since we knew we had a family history of metabolic stuff. He was concerned on many levels and thought that my questions were very valid and needed to be looked into more. He suggested I contact a genetics doc and also the medical examiner's office to see if they still had things from his autopsy. I got a hold of them immediately to make sure they did not destroy anything and they have what is left of my son in a jar and in their freezer( I hate the very thought of what they do to remains after an autopys...it makes me so mad and why I didn't wan't one to begin with, but I had no say. I cry every single time I think about what they did to my baby and his body).

I called the genetics department at Cooper since I knew they took our insurance. The boys old ped had worked there during his internship and that was the first hospital Josh was at when he had his seizures. I was not thrilled with them but have not been with St. Chris and figure that I will just have to teach these docs, The United Mitochondrial Disease Foundation has a program where they will send one of the specialists to a hospital and I know they are trying to make their hospital a pediatric specialty hospital so it is worth a shot. If I don't like the first appt or the outcome I can reevaluate what we are gonna do.


I called the genetics department and got a call back right away. Ironically(or just part of God's plan) they happened to have a cancellation for next Thursday. I told them I would be there no matter what since if it wasn't for that slot opening we would have been waiting until Sept. This doc had come highly recomended by a pulmonologist that we had followed with at their hospital prior to our switch to St. Chris.

She said this doc has no problems saying she doesn't know an answer but will find out and hunt down any docs that she needs to in order to get answers. I appreciate that more then anyone could immagine and hope it works in our favor. I went today to drop off their records so they could sift through them prior to the appointment and make copies of the things they need and let me know if there is anything else we have to get.


My day did not end there either. I've been doing a lot of research on a corrolation between SIDS and metabolic stuff, especially after the conversation with the doc from the SIDS foundation. I have a friend who is a microbiologist in German who had also told me about chemical issues. I know that metabolic stuff can also be related to enviromental factors and could actually be a combination of heredity and environment. I've been trying to switch a lot of the kids things over to products that don't have toxic cemicals involved in their make up. I happened to look at some information on a company that we have recently noticed comercials for and I happened to see in the local store. On their page I found a page to a company that specializes in chemical free mattresses.


That is unheard of here in the US apparently. My recent research has lead me to find the US is the only country worldwide that allows chemicals on our mattresses. Our mattresses cannot be sold in other countries due to toxicity levels!!! The chemical has been linked to SIDS and metabolic issues. I just about had the wind knocked out of me when I found all of this information. There have been numerous studies that we here in the US don't acknowledge but after speaking to others that live outside of our country and my research, I have to agree with them and even if I am wrong, I am not willing to take the risk. I emailed this company http://www.hastens.com/en-us/ about their mattresses to see if they had any East Coast facilities since they are a specialty store in Hollywood, CA with extremely high prices. I just gave them a brief reason taht I was looking into this and asked if they could give me some guidance and help I would be greatly appreciative of their help. I never expected to really hear from them other then the standard message.


Just about a half hour later, I got a phone call from CA. I really thought it was a bill collector to be honest. When I answered the phone there was a mans voice on the other end who just did not know how to say what he was feeling. He fumbled for the words to tell me who he was and how sorry he was that I had to contact him under the circumstances. Our story had touched his heart and he happened to be the vice president of this company!!! My jaw just about hit the floor, here is a vice president of this company calling me, a bereaved NJ mom. He was such a wonderful person and he tried to tell me how to go about making our house a "green" house. He told me what was importnat to switch out first since the entire process is expensive.


I cried several times as he told me his experience with SIDS in other countries(He was not trying to sell me his product because he gave me other alternatives if we can't make this happen but rather, he cared for us...complete strangers). His company is the only one here in the US that has 100% chemical free mattresses. He also confirmed much of my research on SIDS and cell dysfunction and all the chemicals we use in our homes. He explained why we now have a new sleep position for children here in the US and all of the things that go hand in hand with the chemicals on our childrne's mattresses. The one thing I don't get is why a child's bed has to have this stuff on them because it isn't like they are gonna fall asleep with a cigarette in thier hands and set the bed on fire! Side effects of chemicals is nothing new to most of us since there are many people now realizing the damage these things have done to many people's health. He told me that they are willing to work with us to get our boys healthy mattresses. I just sat there sobbing and thanking him. He didn't have to do that and told me that he thought that we all have a purpose here and if I find any organization to work with him on spreading the word about all of this then I am to call him and he gave me his personal cell phone number. I am still in shock now!!!


My theory on it is definately that those with metabolic issues on a hereditary level are more likely to have issues with these sorts of chemicals and that is why not every baby dies. No matter if I am wright or wrong, I am not willing to chance my childrens lives, I have already lost one. I don't know if George was here to save his brothers but I know he has touched so many people in so many different ways. Hugh has such a huge family history of loss of infants to SIDS and lots of other serious medical conditions to those who are close to him. The genetics office said that there has got to be more to this all and I have to agree. No matter the case, he is changing lives even in his death and I guess if you have your child go before you, you want at least something good to come from your pain. I am just still so AMAZED how a 4 month old little boy who could not talk or walk can change the world in such an amazing way.

Trouble Keeping it Together

I just feel so very out of sorts. The past few days have been very hard on so many levels. I think that the "shock" of it all has worn off and we are just left with raw emotion. It is difficult to get up in the morning and I keep finding I forget things compeletely! Anyone who knows me, knows this is not typical for me. I am the mom who juggles a million things. Remembering where everyone needs to be at what time was always so easy. Now I can't even remember it the kids ate or brushed their teeth.

I've done a lot of thinking and also talking to Hugh. After much thought, I realized why I now hate to cook. The kitchen is the place where Hugh had handed George to me and my nightmare began. I did CPR on him laying on my counter and those immages are so very vivid to me and I cannot get them out of my head. Cooking and using that counter is just torturous for me. I could not pinpoint why I didn't feel like eating or cooking and then it all came to me and washed over me and I just sat there crying. Of course not doing it isn't an option but every single time I do, those horrible immages take over my thoughts and I barely get through making something as simple as toast.

These immages keep coming back over and over again. I cannot get rid of them dispite much trying. Yesterday I came up the stairs in a panic because Hugh was yelling and I heard his feet pounding hard across the floor. My heart dropped into my stomach because that is the same way it was the day he died and the moement he found him. Anytime I hear him get upset or walk hard on the floor panic washes over me and I am thrown into an all out panic attack. Yesterday I just had enough and looked at him and yelled at him to stop freaking out because he is making me go crazy and then just broke down in tears. Medication and talking to people has not helped, time is going to just have to help with this but it is such a nightmare to have to live like this.

So many "what if's" keep flooding my mind. What if I had gone into his room earlier when I went to get Richard ready for school? Would he still be here? What if I had changed his pajamas the night before like I had wanted to? What if I had remembered to do infant CPR rather then adult? Would my angel still be alive and not an angel? Had we called 911 right away would he still be here? If only I had prayed harder or had more faith or done something different would he be here? I know all of this is normal but when you are living it, it is just torture and makes it difficult to just breath. Most of today I walked around crying or with tears in my eyes.

If it was someone else I know I would tell them that there was nothing else they could do but as their parent you just feel so responsible for them. I feel like I failed him and in the biggest way possible. I should have saved him, that was my job as his mom! Being a mom is what I was always good at. I failed in many other aspects of my life but I was good at this. Yet I feel like I have failed at it all now.

I have joined an online support group and looked into several other local groups dispite the fact I am not really a group kind of person. It was nice to talk to other parents who have lost children who really understand where I am with all of this. They assured me that all that I am doing is totally normal and that it doesn't get easier but you cope better. So many things that others just don't "get" are things that only someone who has lost a child can understand. It made me know I was not crazy and that it is ok to feel this way.

I did contact the SIDS foundation that had initially gotten a hold of us. They have not contatcted us since 2 weeks before his autopsy report was finished and I just don't get that. Initially I was so upset that they had our information. It was as if they got more information on my son then I did and I was his mother. In a way I think I was angry becuase I felt that they had more say and I lost all my say the moment he stopped breathing. All of these strangers who did not even know my son had more pull and say in his death then I did. That is really what was very upsetting to me. I know it had to be that way but it was hard to have to feel like we were under a microscope and that everyone else had say and we didn't. I carried him and I knew him, not them.

All of a sudden the calls just stopped with no warning. Yes we can call there but it is very difficult to get up the composure to just make a phone call about something simple, this is so hard. They have a thing where someone comes to read through the autopsy and I want to do that since I do have some questions about it all. I emailed them but have not yet had corospondence back. I did add him to their memorial page today.

Part of me hates to read their page though. It tells you all the things to avoid doing to try and prevent SIDS. Somehow you sit there and question everything you did dispite the fact you knew there was nothing more you could do. Was he too hot in his pajamas and with his blanket...they say that overheating is one of the leading causes. Then I tell myself he had worn those and had that same blanket before. If he did have a metabolic issue then yes his autonomic nervous system could have malfunctioned and then he would overheat but I will never know that. Then I say, we put him to bed on his tummy because he asperated and had horrible reflux that we could not get under control. If we didn't we would never get him to sleep and played huge issues with aspiration...it was a damned if you do and damned if you don't thing. They are suppose to sleep on their backs but that was just not possible for him. So many times I changed his positions trying to make it more of a back sleep but it just never worked. Reading their page makes you feel as if you should have known better even though they don't say that, it is definately self inflicted guilt coming from so many what if's.

He had breathing issues since he was born. Because he didn't do it in front of docs, he was not on any monitoring or any of that. I know that he always had breathing issues but didn't know what it was from, I told the docs a million times I was concerned about it. I would always tell them it was not "normal" and 4 kids in I knew what normal was but it was never long enough to video it or during the times he was in their offices. I regret not pushing with this further but I also know there was nothing much more that anyone could do. He had trouble eating and just had lots of little things but no one could have predicted this.

That entire day seemed as if it was the longest day in our lives. The moments that went by between when we found him and when he was prounounced seemed as if it was an eternity. I still play those moments vividly in my mind and know it was only a few minutes but my got it seems like forever. Someday I hope that these horrible memories are taken over by only good ones. Good ones and bad ones are all painful right now and have been since he left us. Having lost him makes us feel like we are on a different planet. A friend of ours who also lost her child explained it as if you were droped off in some forgein country with nothing but the shirt on your back. You don't speek the language and can't leave and have to learn to find a way to survive.

I would give everything to have him back, yet know that it will never happen until I meet my maker. I've found myself listening to a lot fo Christian music and trying to find comfort that way. Being around others is just hard and I can't do that right now. It is odd because you feel as if you are there they are all sad when they look at you and they have to be careful what they say. This is what makes you feel like an outcast and yet if they make small talk you find you ahve no patience for that either. In many reguards I just keep telling myself it is part of the road in front of us. Today after talking to several people I know this is normal but this normal sucks. Everything is hard to do and you just feel like it is so hard to keep it together and sometimes are just overwhelmed by that very fact. There is a great Christian song called "Everything Falls" by the group Fee and that is where I feel I am right now.

It is then that I carried you...