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Tuesday, April 19, 2011

Journal before the life lessons

I have a series of life lessons that came from Yesterday.  First, I’m going to write a journal entry of the events of yesterday and tomorrow I can post some of those life lessons.

Yesterday was a day to remember. Or forget, whichever you prefer.

Let’s start at the beginning….  I’ve been struggling.  Struggling with the blog. Is it for me? Is it too depressing? Is it real? Do I really want to be someone who has a bunch of people read my words? If so… do I need to “watch” what I say? *sigh*  I’ve been having a bit of writer’s block because I’m not sure how the blog is coming off. Or maybe it is because I’ve become to aware of how many people are reading it since people have started to hear about Alexander’s need for a seizure dog.  Either way – I have really been struggling with what to say here.

So, then yesterday smacked me right in the face.  Actually – the weekend smacked me in the face.  Here is a rundown.

Alexander’s seizure medicine is in the process of being tweaked.  He has been having these small, barely noticeable seizures.  Ray and I have watched and waited… to see if the medicine would take hold and put these seizures to rest.  The medicine is not the right combination.  This past weekend Alexander had a bunch of mini seizures.  It was becoming an issue that needed to be taken care of.

Yesterday began the chain of phone calls.  I called to discuss with the neurologist what changes to make in his medicine.  I also called the pediatrician about his formula, made arrangements to have his formula picked up, called our lawyer to finalize some legal documents, called the medical supply company to order our supplies, called the pharmacy (who knows us by name…), and made arrangements for the twins to get picked up because I had to rush home after work for Alexander’s PT.  I’m not saying all of this because I want sympathy.  Actually – sympathy is pretty far from what I want from anyone.  Sympathy almost rhymes with PITY and as much as I appreciate people praying for our family, at the same time it makes me sad that we need those prayers.  Yesterday was one of those days when I seriously didn’t know how I was doing it.  Some days are good. Some days are bad.

Some days you have to ask your father to stay over because your youngest son is having another uncontrollable seizure and you have to call 911 again, and he rides in a helicopter again (only this time I couldn’t go with him.), and we go to Hershey again

Yesterday I worked to not scare my children when the ambulance came.  I needed to explain why Alexander and I were leaving but they were not allowed to go in their most awesome vehicles.  You know what I told my kids last night as I kissed them goodbye? “Mommy has to go and tell Fireman Sam what to do.  She has a big important job to be the boss of Fireman Sam and I can’t wait to tell you all about it when I get home.”  It sufficed, but this morning Andrew asked me, “Mommy? Can you take care of me? Where am I going today?”

Yesterday was a day of lessons.  Yesterday, I was worried about something so insignificant as a little piece of cyber writing.  Yesterday, I realized that many people worry or become angry over insignificant things.  Yesterday, I just as quickly realized the power of words – to hurt and to encourage.  Yesterday I learned that I’m not a fan of helicopters that don’t let the mother of a little boy ride along.  Yesterday, I was not a fan of seizures.  Yesterday, I thought I just might break. 

Finally, yesterday has past.  Tomorrow I will take Alexander to do a 24-hour seizure watch.  An EEG, video recorder, my baby, and myself will hang out to see what happens.  Tomorrow, I’m going to pray for a seizure so we can get some real information about what is going on with my baby. 

And finally, tonight I just kissed my sweet babe goodnight.

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At April 19, 2011 at 9:40 PM , Blogger Kisses4Kaylee said...

I know where you are coming from on multiple levels. I sit here typing this as Kaylee is hooked up to a video EEG, and although they have seen seizure activity, I still hope for a definitive pattern so that we,too, can control those barely perceptible seizures with medical assistance. As for your blog, it is an honest look at how you are feeling in the moment you are writing. Regardless of whether you are feeling scared, sad, excited or inspired, it is your outlet and should not be censored based on others' perceptions. In my opinion, no one has the right to pass judgment on what you write...other than you. Follow your heart, as you have been... the answers will come. Wish you lots of luck in the search for answers to Alex's seizures--and as always, sending you both virtual hugs.

At April 19, 2011 at 9:42 PM , Blogger Eric, Erin, Elsie and Emmy said...

Kristen, I love reading your blog and understand your worries about what you write and what people read. Prayers for the twins, prayers for you and Ray, prayers for Alexander and for tomorrow. I pray that answers are found!

At April 19, 2011 at 10:33 PM , Blogger justin and marsi said...

Keep on writing Kristin if that is what you feel led to do. You inspire so many through your words, but most of all if it is "therapy" for you and helps you, then do it. Don't worry about others reading. You may greatly affect lives that you in other ways couldn't. Love you girl. Stay strong.

At April 19, 2011 at 10:37 PM , Blogger Lisa said...

Kristen... first of all I want to say that I always feel thankful for your ability to express yourself through writing... I often just say amen after reading your blog! We have been through much of the same and I feel like you guys are following our footsteps... wish you weren't but because our kiddos are prone to this seizure thing it becomes reality. I love being able to enter into your world through your blog and want to thank you for sharing. It has become a counselor for me and has helped me understand what I've felt at times. Anyways... enough babbling!! But Thank You for all your efforts and I hope you continue to write! Sending you hugs and always keeping little Alexander in our thoughts. Hope to meet again next summer!!!!

At April 19, 2011 at 10:39 PM , Blogger Shannon said...

Kristen, I pray you get answers tomorrow. And over the web, I'm sending you HUGS! I love your family, you are all beautiful! And I love reading your blog!

At April 19, 2011 at 11:03 PM , Blogger Hilary said...

We are sending love and support to your whole family!!

I want to thank you for allowing me to follow your journey. Thank you for blogging and for blogging so honestly. Reading blogs and seeing the pictures was the first positive information we found after learning of Magnolia's diagnosis. Since Magnolia was not yet born when we received the diagnosis we read everything we could find. We didn't have a newborn to care for yet so I really can't tell you how many hours of reading we did, but it was a lot. Blogs saved us. Pictures of smiling, happy families and kids saved us. Thank you for that.

At April 19, 2011 at 11:14 PM , Blogger GingerGirl said...

I do not pity you, but I am definitely rooting for you and your family. I read the blog and say a pray, or send positive thoughts your way, or shout AMEN, or wipe a tear of understanding, or hug my kids one more time before heading to bed...and for this I thank you.


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