Yesterday was quite a day for us. Of course just as you think things can't get any worse somehow they always do. We had gotten an email on Tuesday from Michael's teacher saying he wasn't himself. We kept a close eye on him but other than some sensory stuff and just that instinctual feeling that he is off, there was nothing alarming. Well, that was until the early morning yesterday.
Hugh came downstairs to tell me that Michael had a rash on his legs...itchy spots to be exact. Of course the first thing that came to my mind was Chicken Pox! There was a kid in their school that had them although they were not in the boys class. Hearing that just set me in enough of a panic since I am not immune to the virus and that poses a huge risk for the baby. Of course I tell him I will be up in a minute to check it out and give a diagnosis. He made it back up stairs only to tell me to hurry up and of course that made my heart drop.
I took one look at him and knew he had an allergic reaction to something! His entire face was swollen and getting worse by the minute. The rash he spoke of was hives not chicken pox as I was fearing(yes I know the one positive point of this whole thing) I hurried to the medicine cabinet hunting for the benedryl I always keep here at the house. We gave him a dose of it but I told Hugh we were taking him to the ER because I was not playing with this. I knew the benedryl would start to work and hopefully avoid breathing issues should it start to get that bad.
I called my mom and asked her to please come and sit with the other boys so they could get off to school. Joshua heard that we planned on taking Michael to the hospital and that was enough to send him off the deep end. He started screaming and crying just begging me not to take him. I had to get dressed and headed for the bathroom and he was following me pleading even harder telling me that he loved Michael and I couldn't let him go away too. The terror in his eyes was unmistakable as he ran to be with Michael and hugged him holding onto him for dear life.
I can't tell you how very heartbroken I was for my children at that very moment. The fact that they will forever relive the moments that transpired after we found George just weighs so heavy on me and knowing I can't fix that for them is even worse. Hugh and I were both in our own state of trying to hold it together but inside falling apart. At one point I just could not stop shaking and kept talking myself down from yet another anxiety/panic attack. Hugh had fear written all over his face and tears welling up in his eyes. We calmed the boys down as much as possible and Josh was much better once my mom got here.
Hugh sat in the back of the van with Michael and I drove him out to Virtua in Voorhees. It was a hard decision since we have a hospital a block away and I did the in-service there but only two people showed up and none were the ones there in the morning we brought George in. They were so unprepared for peds that morning and were having people run all over the place looking for equipment and I was afraid to relive that. Michael was stable and you could see some of the swelling had gone down so I figured I had enough time to take him to the hospital more equip to handle his needs. Michael was also scared but was doing ok and you could see that he was exhausted!
We got to the ER where he was immediately seen. I had his emergency paperwork this time but really did not need it since they were familiar enough with Mito. They said I was right with my diagnosis of an allergic reaction and said that it could be just about anything and they have been seeing more and more of it lately. We discussed the course of care and agreed to wait out the benedryl rather than give him steroids(the typical course for a child without Mito) due to Mito. He was not having breathing problems and the med was working but taking its sweet time. They gave us a script for steroids should we need them later on and the bendryl not work or he start with breathing difficulty.
Fortunately we were in and out without much drama other then with our hearts in our stomachs. Once we sat there thinking about it both Hugh and I found ourselves in tears with no way to control the rush of emotions. We relived the day George died and then both thought that God cannot let anything happen to Josh or Michael, they are so attached to one another and we could not imagine what would happen to the other if one of them was taken to heaven. The very thought was just so very overwhelming. So many things ran through our heads at that moment.
We got home and Michael slept for several hours. I had an appt for the baby but had to call and tell them I was in the ER so they rescheduled it for later in the day and I had to head out there. Hugh kept an eye on Michael and both of us kept making sure he was breathing and would not leave the poor kid alone! I sent email's to both schools to let them know what had transpired and asked them to let the older boys know Michael was ok and home. We did not want them to freak out all day and also to talk to someone should they need to since we know how bad it was for Hugh and I and the panic and fear in their faces was enough to know they were reliving the same moments we were.
I still cannot get the moments from the morning George died out of my head. Most of the night I have been awake off and on. At one point I went upstairs to check on Michael to make sure he was ok in order to alleviate my own anxiety. Than I sat here thinking about the baby as she moves in my belly and how I know we are going to be a mess! I know the worst will be the days leading up to the age that George was when he died. We know that George was the same age Joshua was, to the very day, that he died and Josh had his first seizure. I just keep praying for God to give us peace about all of this because right now we feel like we have been hit by a bus...much like the days following George's death where we walked around in a daze just reliving the moments that transpired in utter disbelief.
If you add in all the other stuff going on here, Hugh and I are just out of sorts, functioning to get through the day but that is about it right now. Both of us are kind of like...ok what is next? Really? Why? Of course on top of it all he has officially exhausted his unemployment so that just keeps looming over the two of us as we have no idea what is going to happen. He is hoping to be able to get at the very least a part time spot over at Sears and is still waiting to hear something official. They don't hire full time, like many companies, to avoid paying benefits but at this point he has no other option. We head to speak to a lawyer today to find out how to go about and if it is possible to save us from loosing the house. With all we have been going through we just cannot handle loosing the house right now and neither can the boys. There has just been way to much change I cannot add this to our plate or theirs.
Thankfully the boys have no idea and we really are not deep into it nor has it gone to foreclosure but we just don't want it to get there. If we have to declare bankruptcy to keep the house we need to know where we stand. We don't have the $5000 to give them by the end of the month to stop them from going to court. I have no idea how much longer my unemployment stuff is going to take and the mortgage company doesn't want to hear that unemployment is dragging their feet. This of course is hard for us to do but like I told Hugh it wasn't like we were neglectful or frivolous irresponsible people...life just keeps happening to us at no fault of our own(although I am sure there will be people that think otherwise without knowing the whole story behind things).
I'm just hoping to walk away with some sort of peace of mind where the house is concerned and I know that will take a huge burden off of us. It sucks that we have to go this route since once the unemployment is resolved I will be back paid but there really is nothing we can do at this point having no definitive idea as to when they will stop postponing things months at a time. I also can't take the chance they would deny it(although I highly doubt it)because that would put us in a worse position should we not have things already in place. I'm a proactive person rather than a reactive person since often times things don't go smoothly and take much longer than they do for the average person. I have no idea why this stuff always happens to us but it does...I should be used to it by now but I'm not. Hugh of course is taking this all the hardest feeling much like a failure but I told him there is no shame in this. Life happened and it happened to us and keeps happening to us and we have turned over every single stone to avoid this situation and as of right now we are just looking into our options and trying to be responsible people knowing when to not ignore a situation that is this important.
I truly hope that we can catch a break but somewhere in all of this the important things are what matter. After yesterday, and the whole ordeal, we realize that we don't have control and that we just have to have faith that things will work out the way they are suppose to. Life will go on one way or another. We will have days like that where we want to forget the world exists and that is ok as long as it isn't every day and we don't find ourselves looking for other forms of coping like drugs or alcohol we are ok. We need to allow ourselves these moments and not be so hard on ourselves. It doesn't help when others are so judgmental because we are always harder on ourselves and that just compounds things but I pray we can keep in perspective the important things and that we don't have to answer to anyone but God and he knows where we are in life and why! Please keep us in your prayers and especially the boys after such a difficult and emotional day yesterday.
George's Guardian's of Grace Projects
Stocking project is now in full force collecting donations. We have a list of the items we can use. You can also choose to sponsor a stocking in memory or honor of someone else. We will include a paragraph or two in the cards we place in the stockings to let the recipient know about the person that means so much to you. Our paypal account is posted on this page and ready to take donations. Email us for a list of items needed or with any questions or information you would like included on a sponsored stocking/donation.
Video Tributes/Celebration of Life Footage
Here is a link to a video tribute that was made by Richard's dad in memory of George. Get out your tissues!
We Finally have footage from the service up and running:
It is in 4 sections running about 17 mins each. If you were unable to attend, you can now see what you missed. We were so blessed to have everyone there with us in person and in spirit!