This morning was pure fear. I have recounted the story many times throughout the day and as I recount it, it gets easier to tell, but the reality of that moment hasn't changed. Even as I've told the story, there are parts I haven't been able to talk about.
Yesterday Clayton started to act like he might get sick. By last night he was rattling like a freight train and coughing like mad. We gave him some Claritin and Tylenol for a 100.7 degree temperature and we all went to bed. Around 5 am we all woke up and Clayton tossed and turned trying to get back to sleep...still rattling and still coughing. I finally decided to get up and shower. When I got out and dressed, I went over to lay back down. As I stood by the bed, I heard a clicking-like sound coming from Clayton from under his pillow. I lifted the pillow and noticed he was in a position almost like he was throwing up which combined with the sound led me to quickly turn on the light. I knew something was wrong when I did. I noticed his eyes first. The best way I can describe it is that they weren't really "there". Then I saw his lips were blue and he didn't appear to be "alert" in any way. You know that moment where you notice your child is choking on a piece of food? This was well beyond that moment. I rolled him over and hollered at George that something was wrong. George scooped him up in a flash and I swear walked off the bed. George stood for a second holding him banging on his back, paced for second and then rushed to the cool air of the garage as he remembered that it can soothe constricted airways. I rushed trying to find a phone to call 911. All the while we were both screaming in the confusion of not knowing what was going on. I remember George kept repeating, "no, no, no". I remember hearing that and thinking "Oh no, we did not get through the last year to lose our child like this." I kept yelling, "anything?", and George kept yelling at me to call 911 as he was banging on Clayton's back and I was on the phone with 911 in hysterics telling them to "come right now." The guy kept asking me all these questions and I couldn't answer them and focus on Clayton. I just started screaming at the guy to "stop asking me all the f*#%$&@ questions and send them NOW". How the hell are you suppose to focus in your child whose in peril and listen to the 911 operator? As far as George and I go, our child in peril and sanity do not go together. I just started hollering at the guy that these questions were ridiculous. He hadn't even asked my address. So I just called it out and again told him to "send them now". Then I hung up. He called back. More questions. Meanwhile George was trying to revive him any way he could. There were times he wasn't sure if he was starting to breathe again and he was trying to relay this to me and me to the operator and I was trying to watch Clayton. It was a mess. There is no way to describe the flood of emotions George and I felt waiting for signs of life from Clayton. And for two people that know CPR, it was not the first thing that came to mind. It seemed to make more sense to bang on his back. Maybe that was because we wondered if he had choked on mucus. What seemed like a lifetime was I'm sure only a few minutes. After some frantic efforts, we got him to slowly start breathing again. There was no gasping for air, it was just a slow recovery. His color got a little better and then an officer and a fireman showed up. We laid Clayton on the couch and sat with him as we explained the situation. After the paramedics got there, we went to Thomas.
We still had no idea what the hell had just happened. Clayton had never done anything like this and despite everything that we have been through with him, we have never felt the need to call 911 before. This had been bad. Was this some kind of choking or a seizure? At this point it was still only about 7:00 in the morning.
Long story short for the next couple of hours, Clayton's O2 stats were slow to recover which continued to worry us. Even with the blow bi in his face, his stats were only in the 80s; that isn't normal. Eventually they made their way back into the 90's and we were left to figure out what had happened.
A few hours at Thomas and then they transferred us to USACW. The consensus seems to be that 1.) he has the flu type A 2.) he was having serious mucus secretions before the episode 3.) his air passages might have been slightly constricted in a croup-like manner and 4.) he had a significant spike in temperature in a short amount of time. All of these things almost became our "perfect storm". The flu caused mucus secretions and a tight air way and fevers. Lots of mucus can't fit well through a tight passage. They believe the significant spike in temperature caused a febrile seizure making him go rigid, which combined with the other symptoms led him to essentially choke. The odds that all of the things would come together and hurt my child? Figures. What if I had taken a little longer shower? Or gone to the kitchen after for a drink?
I thought that all of the worrying I have had to do about losing Clayton this past year would have prepared me in some way if losing him ever truly flashed before my eyes...it didn't. Seeing this was different. I watched my great grandmother take her last breath and I can tell you that the two things are nothing alike. Seeing someone who has led a full life leave this world is not pleasant, but there is a peace knowing they are better off where they are going. Seeing your child, whose time should not be up, lifeless is torture. George and I had probably three minutes in hell where we thought we had lost Clayton. We truly thought that was it. We were trying like hell to revive him and it didn't seem to be working. After getting through this past year, if I had lost him from flu symptoms, I would have then had some real anger issues. It was the worst few minutes of my life. I don't know if George and I will ever sleep peacefully again.
This means that Clayton has spent three out of his five Thanksgivings in a hospital. What a holiday. Hopefully we can go home tomorrow, eat some good food, get a Christmas tree, decorate for the holidays and I can watch Lifetime Christmas movies through the weekend.
Please pray for peace for those who have lost their children...especially those that have had to find their children in a helpless state. On a scale from 1 to 10, with 10 being passed away, I would say Clayton was at an 8. He is now sitting beside me breathing in and out and for that I am so thankful. Not everyone has this outcome. My heart aches for those that don't. For three minutes I felt a pain that I could have gone an entire lifetime without feeling. I hate it for all of those whose outcomes were not as fortunate as mine. There are a handful of parents out there that I know, who have experienced similar situations that have resulted in the loss of their child and they are constantly on my mind.
Be thankful for your kids. What happened to Clayton was in a way just bad luck. It could happen to any child. Children under 5 cannot regulate their body's temperature to ensure that it gradually increases. Therefore they can have sudden and significant temperature spikes that can cause febrile seizures. If your child has a history of croup like mine and is sick with lots of mucus, watch them closely. The doctor said that those severe temperature spikes can occur in the first 24 to 48 hours of being sick. So be careful!
November 22-25
We ended up getting out of the hospital Thanksgiving afternoon. One more year missing family get togethers, but they were all kind enough to pack us up some good meals to go. Thank y'all for that! Since then we have just been getting Clayton over the flu. We let him play outside on his swing set for a little bit here and there because it makes him sooo happy. He has figured out how to go down the slide hands and head first. He just has to watch those landings...
We also got our Christmas tree which, we knew after last year would amuse him. He even insisted on putting on the first ornament while I was still working on lights and he picked out a star that has HOPE written on it. He insisted that it get centered and go at the top of the tree. He may not talk, but he makes sure you know when he is satisfied with something and when he is not. Good family time though during a much needed long weekend which technically started on Thanksgiving...which also happened to be the one year anniversary of Clayton's diagnosis.
What a year it has been. We have made it around the bend so to speak to the point of remission, but now the question is can we stay this way. We are thrilled he is in remission, some kids never make it this far, but many of those that do go into remission, relapse. I have had to toss so many ideas around in my head this past year in an effort to come to terms with this reality. There have been too many times I have have had to hold it together has I pondered what decisions I might be forced to make and what to do if I lose Clayton. In July, I met a woman that her son was diagnosed with neuroblastoma, went into remission, relapsed and then they decided not to treat it. They knew the details and they made the decision best for them. I remember being angry, thinking how could they just give up. Funny how things change in just a few months; I am now wiser. If Clayton ever does relapse, I am now prepared to evaluate the situation and make necessary decisions...and as hard as it may be, I am also prepared to say no to treatment and yes to living what time he does have if that seems like the right choice given the circumstances. I have learned enough and heard enough and seen enough now to feel confident that I am as ready as I will ever be to know when to say enough is enough. I don't mean to sound hopeless, rather, I have accepted that this is part of my life. I have had to educate myself and prepare myself to be able to make a smart decision about these things. I say a smart decision, because there is no easy decision and there is no right or wrong. I live in the weeks and months between scans and treatment and I live it knowing that at almost any time I could hear something that will forever change my life and mean I have to decide my son's future. I hope he never relapses and I never have to worry about any of that, but if I do, I feel like I am now in the best place I can expect to be in to make whatever decisions need to be made. Unfortunately, this is a nasty cancer and you just never know. I just heard that one child who has been clear for years has just relapsed and then of course there is sweet Matthew who has never made it to remission. It is a cruel world. Clayton has managed to fall in the 30% who make it to remission, and now we have to beat the odds of relapse.
I have this naive sense that things in life should be fair and even though I know better, it is hard to shake that notion. The truth is though life isn't fair. Good people get hurt and suffer everyday. Innocent children are chosen to fight battles they don't deserve. I know this and yet, I have a hard time accepting it. And in this unfair world, if you are one of the people that is fortunate enough to see the light through the darkness, then those moments of light are what you cling to. Maybe it is a DIY project or a trip in the woods or a Make-a-Wish trip to Disney World. I know I try to seize my moments of light. I long for the people that bring me happiness and want to limit my time with the "other" people. I crave the moments I get to have a quiet afternoon at home or do crafts and drink a few beers with a girlfriend. I live my life for my child and (almost) everything I do is for him. Sadly, I cannot make this world fair for him. I cannot make bad people good and I cannot make sick people well. I have to accept that I cannot fix the world as I desperately wish I could. I am just a girl from a small town in Alabama that is is in no position to fix anything, so instead I cling to my moments of light. Last weeks events have made me almost content to forgo any big dreams and instead just live a quiet life with my sweet baby soaking up every moment of the amazingness that surrounds him that I can. My life would not be complete without him. Before him, I was lost, still trying to figure things out and he saved me. Without him, I would be lost again, but I would be better for having had him in my life. A quiet life with him is all I want. I want peace and I want him....
Someone I know recently lost a child and my heart has been breaking for them. I have spent this last year living with the constant fear of losing Clayton and then to have a call as close as the one we had Wednesday morning just makes me so thankful for my child. It feels like the more thankful I am for my child, the more my heart breaks for this person. I got pretty upset about the whole thing. I almost felt crazy because I didn't really know the child, just the parent and yet still I was so upset about it and couldn't get it out of my mind. Given the past year, the whole thing hit pretty close to home. And then, Wednesday morning made it all worse. I tried to describe the chaos from that morning, but the feelings from that day cannot be described. What I saw when I saw Clayton can not be justly detailed and the horrible nightmare that flashed before my eyes can't be retold. That morning, those things, it all just intensified my pain for all of those who suffer the loss of a child. I wish I could spare them their pain. I hate the idea of anyone losing a child especially someone I know and someone I understand to be such a devoted parent. Anyway, it just sucks. Please pray for anyone who ever has to go through the agony of losing a child.
Leaving all of my philisophical babble behind, we also found out that we will not be going to NYC this week for treatment. Clayton was HAMA positive, which worked out because they probably would have made us wait because of respiratory issues from the flu anyway. It also worked out because there is a chicken pox outbreak at the Ronald in NYC. We are content to stay far far away from that. I just hope all of the families up there are OK. Chicken pox can be very dangerous to children with compromised immune systems. Just getting pumped up for our Make-a-Wish trip now!
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