Friday, October 19, 2012

Preston's Story

Amanda Sommerville is one of the mothers I have recently connected with through this blog.  I asked her to share her son's story here.  I hope it is an encouragement to everyone out there dealing with RAS.  Feel free to leave an encouraging word to Amanda and her son in the comments section below.
 Our family's journey with RAS started a little over two and a half years ago when my oldest son Preston was just 2 and a half years old.  I was pregnant with my other son Jackson at the time and we were living in Maui. I am a stay-at-home mom and do not think I have spent more than 6 hours away from my boys at a time, so I am lucky to know everything about them and have lots of time to love on them.  
The first run-in with RAS was a very scary and blurry moment for me.  Chet, my husband, was at work, and I was at the pool with a friend and her two boys.  Preston was playing with his friend and running around in the grass and just happened to be holding a small plastic Elmo toy in his hands. When he fell flat on his belly, the Elmo toy was jabbed into his eye at the same time.  I of course ran to comfort him as he was crying very hard at first.  I was just holding him and trying to calm him down when he went into what I call the "silent cry".  I have seen him hold his breath for short periods when he has gotten hurt in the past, but this was different.  His face looked almost distorted in a way and a bit pale.  
I continued to hold him in my lap when he went into the seizure.  His body did not shake or anything like I would have thought a seizure would look like.  His entire body went tense and he arched his back while clenching his fists together.  His face was the scariest part to me, because his eyes rolled back and his face froze in a strange expression I had never seen before.  I just remember yelling his name and crying all at the same time. My sweet friend was right there and saw the whole thing and helped comfort me.  It literally was just a few seconds long, but it seemed like forever to me in that moment.  
Following the seizure Preston woke up a little scared and weak, and I remember just snuggling him.  We went home and he was back to his active, goofy self in no time.  I really did not think much of it at that point and just tried to talk myself out of going to the ER at that time.  After thinking about it longer and realizing that there may be more to the seizure than I knew, we decided to head to the ER.  I am not big on hospitals and try to do more natural interventions at home as much as I can when my boys get sick, but this was different and I wanted answers.  Let's just say...I came home very disappointed and defeated.
The trip to the ER proved to be one of the worst experiences of my life.  I could go into all the details but let's just say the doctor was less than impressed with a lot of our natural life choices as parents and in response handled our case very harshly and disrespectfully.  I almost unloaded on the guy but knew in the back of my mind that my first priority was to figure out what had happened to Preston, and I did not want to destroy any hope I had for him being treated properly.  In the end, after feeling attacked and like I was on trial, we left with bascially zero answers.  They actually said they did not think it was a seizure and maybe was a breath holding spell.  I kind of felt ok with that answer but did not like how they were so certain it was not a seizure when I was the one there to see it happen.  I am no expert, but I know what I saw.  After being treated like trash they recommended I get Preston new shoes so he doesn't trip over them anymore....what???!!! Let's just say I never wanted to return there again and would find somewhere else to go from there on out.
Preston's second episode happened several months later, and I had actually forgotten about his first one by this time.  Him and a buddy were play wrestling on our bed and it ended in a seizure.  I did not see what initially happened to hurt Preston, but I happened to walk into the room as Preston was laying on his stomach doing the "silent cry".  My same friend was there again and happened to pick him up and hold him in her lap since I was holding my other son Jackson.  Preston went into another seizure and it looked about the same as the first one.  The face always scares me the most.  This one seemed to last a little longer and even though I had seen it all before, it was still just as scary.  It was devastating to me after this one to know that there may be something serious going on here.  He bounced back after this seizure too and wanted to go right back into playing. That was always a positive point for me, knowing he was ok after each one. 
Chet and I decided it was time for him to see a specialist so we scheduled an appointment with a neurologist that had been highly recommended.  This appointment went much better than our experience in the ER.  The doctor was very kid-friendly and was more informative, but unfortunately did not have many answers.  He too thought that it could be breath holding spells that were triggered by intense pain.  I had a hard time accepting this conclusion because Preston is a boy who gets hurt often and it just didn't seem to make sense to me.  We left feeling ok but not great.  I left hoping I would never have to see him go through one again. 
As a mom, I can be pretty protective and kind of a ninny when it comes to my boys wanting to jump off high things, wrestle too hard, run too fast, etc, but I also know that they are boys and they have the most beautiful freedom, adventure, and life in them.  I never want to stand in their way of becoming who they want to be or crush their spirits.  I of course got a little freaked after the first two seizures and kept an extra eye on Preston and am probably guilty of being a bit overprotective after each one until the worry wore off a bit.  I knew he was ok and would be ok and I should not get in his way of being a kid. 
To be honest, I kind of forgot all about the two seizures until about two weeks ago.  Preston is now four and about to turn five in November.  Wow, where has the time gone!? We recently moved from Maui to Texas.  The boys and I were in Kroger a couple of weeks ago and somehow Preston's arms got twisted in the buggy when he was holding onto it playing with his brother.  I got his arms out and kind of stood there hugging him as he cried out loud.  He was crying pretty hard and loud so I was not expecting anything to come of it, but I noticed his eyes were closed and he was going into the "silent cry".  I immediately picked him up and held him tightly and whispered to him to breathe.  I was rather calm this time around since I kind of knew what was going to happen.  I remember hugging him tightly and looking at his face as his eyes rolled back and his body tensed up.  He literally looked lifeless and seemed to stop breathing for a few seconds. I remember in the first two episodes that he seemed lifeless but it was strange holding him and actually feeling it this time around.  It was still just as scary but I bucked up and stayed calm for him and tried to talk him through it.  He always just cries after and snuggles me for a while as if he is a little scared and confused.  Everything always happens so fast thankfully so neither of us have much time to freak out for long.  I caught on quickly that the seizures obvisously are triggered by an intense pain for Preston.
I did not understand it or find many answers online as to what it could be, and honestly just kind of let it go as if it was pretty normal for a kid to have these type of things happen to them.  It was not until a few days ago that I was introduced to Robin and her blog through my sister Chelsea.  I am so thankful and glad Chelsea told me about Robin and that I now can put a name to Preston's seizures! Reflex Anoxic Seizures was a name I had never heard of so I immediately began researching it and it made perfect sense. Finally it was clear as to what my sweet boy has.  
I feel so lucky that he has only had three and I hope he never has any again, but at least now I know what it is and what to expect.  I am so grateful to know Robin and for all of her knowledge on it.  I am sad that we have met under these circumstances and that our two boys have this similarity, but it feels so nice to have her support.  Thank you Robin for being so helpful and willing to share your story with us all, it means more than you know. I would love to share that altough my son deals with RAS, it does not at all change who he is or how we live.  Yes, I am more aware and alert when he gets hurt and always kick it into high gear when he does, but luckily he is able to still be a fun, active boy with nothing holding him back.  It is so refreshing to know that he will be ok and can still play like any other boy his age:) We will not be defeated by RAS;)
Why did reading this make me cry??  I don't know.  Our kids are so strong, and I guess as moms we get pretty strong, too.  But reading our story in another mom's words reminds me that we aren't alone.  And I love her resolution not to let RAS stop her from letting her little boy be a boy.  Thanks again, Amanda.

4 comments:

  1. Amanda you are such a good mama and I am proud of you for working hard to protect Preston and find him answers. Robin I am so glad we were all able to connect, you are such great mama and I am so lucky to have met you. xoxo ,Chelsea

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    1. I think it was just one of those things that works out for a reason. :)

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  2. RAS sounds unbearably frightening. I am so grateful that my family has not had to deal with this. It is discouraging to realize the the medical community is not only unaware of this, but also that they are so dismissive of mothers. It's infuriating, actually. Thank you for sharing, Amanda!

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  3. Thanks so much for this, Amanda. You've really helped people to understand RAS and the impact it can have on families through sharing your story.

    I'm positive that there are people that will read this and, thanks to you, have answers for the first time about what has happened with their own children. You've been a light in the tunnel for them. :) --Lisa

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