purple day

Today is purple day.

It felt very unsignificant to only mark the day by wearing a purple cardigan. I would have liked to go to some convention, participate in some fundraiser or whatevs.  Maybe some year when we start having days that are NOT filled with seizures I might have time for something extra like that.  Mmmm, that sounds nice.

Epilepsy has changed and dictated so much in our family, even as hard as I have tried to not allow it.

Just like any trial, there is no way to understand what it's like until you've been there.  Little (and big) parts of our day are affected in ways I wouldn't have known.  For example:

Because of uncontrolled epilepsy, Dawson sleeps with Kevin and I.  Here I can monitor the seizures; how many he is having, how long he goes without breathing etc.  This greatly affects the quality of my sleep- which in turn affects everything else. I sleep much better with him right next to me than hearing him in the next room.  He sleeps better and relaxes after the seizures if I'm near vs. waking up scared, freaking out and having to be rocked back to sleep.  

Dawson's bed time / naps are majorly harder because of epilepsy.  With Halle and Drew I would put them to bed and let them cry themselves to sleep.  I know it can be hard for any parent to hear your kid crying for you and be able to not give in.  However you can do it because you know they are safe.  The prob is he isn't safe. First of all, I have to take off his helmet because the strap chokes him when he's sleeping.  Also, Dawson has more seizures when he is tired. So when I have let him "cry it out" I hear him crying, followed by him getting out of his bed and then....THUD.  The crying silences.  I know he is seizing and can't breathe. I wonder where he has fallen, what his head has hit? When he comes too he is hysterical, and after a few minutes of more screaming...another THUD. Etc.  The best alternative I have found is to lay down with him until he's passed out and through the first round of seizures. As a busy mom, this is just hard to keep up with. Not only does it take up a huge amount of time, but it slows me down and makes me tired.  I don't have time for tired.  What is super duper frustrating is even after doing all of that, a seizure can wake him up at any time.  If I'm not close enough to help him fall back to sleep, he's up and needy/cranky.  

Epilepsy takes me away from Halle and Drew.  Yes, this is true whenever you have a baby. This is more.  The time of night where I need to get Dawson asleep, I would like to be tucking in/spending one on one time with my other kids reading stories or just chatting. I still do, but Daws has to be with us and he is very demanding of full attention at bedtime.  With all the extra appointments and needs, I can't do so many of the mom things I want to. Plus I am tired and drained, which unfortunately affects the quantity/quality of the time I do give them. Daws is a major home-body and has a hard time in most public places. Today for example, Halle and Drew asked me (like they ask every week) to come in and watch them in tumbling.  The last 15 minutes I went in and (once again) Dawson fell apart the moment we walked in the door.  Trying to hit me with his helmet, kicking, screaming, biting himself ...the whole bit.  I could only do a few minutes of this while trying to give H&D a thumbs up sign before taking him back to the car.  It makes me sad I can't just sit and really focus 100% on my other kids + 95% of the time.  This could be regular two-year-old stuff, but when you add that regular stuff + demands of the epilepsy= very little extra.

There are sososo many other parts of every day epilepsy affects.  I could go on and on.  I will stop there and just wear my purple cardigan.

Happy purple day.

options

Thanks to my awesome friend Cari for telling me about this:

It was nice to go and learn more specifics of the VNS.  I am very interested in seeing what help it could do for Dawson . . .  PS Who is currently asleep on me and drooling all over everything. I am soaked.  Awesome.

Anyway, the VNS isn't something they normally put in people under age 12 but maybe I can find a doctor who'd be willing to ok it.  Dr. Barkan thinks it's a last resort option.  From what I learned tonight however, I'd prefer to give it a try BEFORE surgery.  We'll see.

It was also nice to be around people who relate and can speak the epilepsy lingo. Felt good to be a part of a group, since I have felt very awkward in most social settings for a long time now.  Sure feels awesome to be understood.

I am sure that's true for everyone.

Well, there's an delicious two year old here who really looks like he needs to be snuggled. Mmmhmmm.  G'night y'all!

unknown

This morning when I took out the garbage I noticed little greens poking up in my flower beds.  My flowers are coming!! :)

It brought up memories of last year:

I had planted bulbs in my newly made flower beds the previous fall.  October 2010.  I was so excited since it was my first real attempt at flower gardening on my own, and in the brand new flower beds Kev and I had made.  It had been a LOT of work and I couldn't wait to see how it turned out. I carefully placed allium, daffodils and tulips in a way to coordinate purples, yellows and (my favorite) the hot pinks.  I simply couldn't wait.

One month later my boys' seizures began. When Spring came after that particularly painful winter, I daily checked my little bulbs as they poked up and readied to bloom. It was therapeutic. Then one day my tulips- my muchly-anticipated-hot-pink tulips - finally arrived.

They were not hot pink.  

They weren't pink at all.  I can't even describe them as a beautiful pale yellow or elegant ivory.  They were simple-dull-off-white with a tinge of grey. 

I was devastated.

It's somewhat funny NOW remembering how torn apart I was about it. I wanted to give up on everything. I choked up for days before I was even ready to talk about it.  After trying for a few days to get over it on my own- and not succeeding- I called my sister Autumn:

"What is wrong with me? My baby has seizures day and night, but I can hold it together.  My husband is rarely home, I haven't had a good night's sleep since November, our finances and everything else is falling apart, I lost a baby, could have died..." (from a surprise pregnancy/ruptured tube/internal bleeding emergency) "...and I was fine with all of until MY TULIPS WEREN'T PINK!!! I can't take it! It is so unfair! Why is this happening to me??!"

Looking back now I know it was about a lot more than just the color of my flowers.  It was a hard time, this time last year. To understate it by a mile. The tulips were only the last straw.  I had expected something and -just like so many other things in my upside-down world- it was one more thing turned out differently. 

Here comes another Spring.  

Once again there is nothing I can do but WAIT and find out how things bloom. So many questions that I have to let go to not knowing. Are the meds going to ever start helping? Does Dawson need brain surgery?  Will it help him?  Could it make it worse?  How will we pay for any of it?  Will he be ok? When is this going to stop? ....

I remember another low moment of 2011.  New Years Eve I consciously realized the entire year hadn't brought even one single seizure free day to my baby boy.  I hadn't stopped it and that seriously stung. What was worse - I didn't know if the new year would be different. It could very possibly get worse. 

It's these "Unknowns" that drive me nuts. Sometimes I think if I could just know the end results - even if they were terrible- I would be able to eventually accept it.  It's the not knowing, ups and downs, waiting and watching the slow progression of this uncontrolled epilepsy, that is just so, so hard.

Will my tulips be pink?

Am I ready to be ok either way?

Come what may and love it, right?

I will try.

links

Here are links to my other blog when I wrote about seizures:

Celebrating 2 Years, April 2009

Grateful, May 2009

Drew and Dawson start having seizures, November 2010

Updates and videos, January 2011

Sleepy, January 2011

Drew's Seizures start to go away, January 2011

Remembering Halle's first day of Seizures, January 2011

Epilepsy Phenome Genome Project (EPGP), February 2011

Starting a new blog, February 2012

Phew. Now my little OCD self can stop wishing they were all together in one place. 

:)

PEIP

We have been meeting with nurses and physical therapists to see if Dawson qualifies for Provo Early Intervention (PEIP).  Another therapist left here just a few minutes ago, and I am feeling really hopeful/excited. 

As long as he qualifies:

* Dawson will get help with a group of therapists to help him in any areas they can;  improving his right hemiparesis, fine motor skills, development delays, etc.

* The therapists will COME TO OUR HOME to work with him. HUGE perk!! (Dawson is VERY different when we aren't at home)

* The cost for all the therapy is awesome.

I will be very surprised if he doesn't qualify.  I sure hope he does- he really needs help. They can't do anything to stop the epilepsy, BUT getting help/moving forward at least in the areas they can (physical therapy especially)... I dunno.  It lifts some of this heaviness of doing this on our own.  I can't wait to get started. 

Hopefully we will get results soon.  

Cole

I met Cole at Target back in October.  What a sweetheart. I am so excited for him and his family.

You can read more about him here.

inspiring

I hope I can make sense of my jumbled thoughts tonight.

I shared this blog in a Facebook message with a large group of friends and family, thinking it would be the easist way to keep people updated on our kids' situation. It was hard to send that email.  For the most part we have kept most of the details private.  Openly sharing these personal thoughts and experiences is far away from my "comfort zone." However, I know there are those who are grateful for updates, and genuionely care about our family.  I also feel like it will be beneficial somehow to have kept a record.

I am very grateful for every kind expression of concern and love we have been given. Thank you for your support. We are blessed to know so many great people.

I have to say though, it feels strange when people have said I am "inspiring" or anything else like it.  Sheesh. I do not feel inspiring.  

Far from it. 

It makes me wonder; have I been painting a false image here?

Over the last 5 years, I have seen each one of my precious children literally crash flat on their faces, over and over and over again.  I have heard the "thuds" and "cracks" as their bodies slam to the floor, into a wall, or down a flight of stairs.  Their eyes transform into that familiar glaze as they lose consciousness and control.  Afterward they get back up and get right back to their little worlds, instantly ready to face it again. They don't complain.  Each one of them has shown incredible determination, patience, and courage.

Then people say I am inspiring??

I don't see it that way. The truth is I only have the privilege of being their mother.  I have not had to go through the things they do. I wasn't qualified before hand to deal with their day to day challenges, and I certainly didn't volunteer. I don't always have a good attitude. Many days I long for sleep only to have a moment to escape.  There are days (like today) when I feel so burned out by the end of the day I just want to be left alone. It feels like more than I can do to even be a somewhat-decent parent. I have so much to be grateful for but I don't always remember to even notice.

Inspiring? I don't think so.

I hope that in writing this blog or when I am venting, etc, I never-ever-ever come across as seeking glory out of the challenges my children have to bear. Or have made myself look like this supermom of sorts. I am only an ordinary, struggling person who doesn't have any other option but to get through it.

I worry when a friend shares what they are going through and then adds, "I know this is nothing compared to what you are going through. . . . " NO. NO. And NO!  I sure hope this is not the message I give to people. We all our given our OWN trials and they are not meant to be compared. 

Our trials are REAL and sometimes hard-as-heck but they do NOT lessen anyone else's.

It feels important to me to clarify this is not my motive in writing this blog.  I hope I make sense since it is very important to me.  Especially for my kids.

And in case someday they read this:

To Halle, Drew and Dawson,

I am so grateful to get to be your mother. I love you more deeply than I knew was capable. Thank you for making my life wonderful.

You have been through so much already in your young lives. I am so so so sorry for every time you have hurt. Each one of you has shown that you are incredibly strong and I am constantly amazed by your courage.

My sweet kids, YOU are inspiring.

xoxo

M