A father’s wish

Jul 20, 2011

Happy 3rd birthday to our beautiful Claire. It’s amazing how time flies by, especially with all of the obstacles we have to go through. I don’t write on this blog often (Nicky does a really good job of putting together these posts) but It’s been a while since we’ve updated our blog so I wanted to give a brief update.

Claire is still battling through her seizures multiple times a day, everyday. If anything, we think her seizures have slightly worsened in recent months, having some seizures last moments longer and appear more intense.  We thought it was the zonegran medication that affected this, but we’ve weaned her off this medicine for over a week now and we see no change yet. This just may be her natural seizure pattern now.

So to arrive at her 3rd birthday and feel that her seizures are worse is very disheartening. We deal with the typical kid things (fussiness, pickyness, bad-timing-for-poopy-diapers) but nothing punches you in the gut like these seizures. To say that they suck is a huge understatement. We have to try really hard to stay hopeful that the next attempt of treatment is something that can help.  There are never guarantees, but we have to will ourselves into believing, despite our constant letdowns.

But don’t think it’s all negative. Life with Claire brings a mixed bag of emotions, including lots of happiness. Claire still loves percussive sounds and enjoys her favorite tv shows. Even in the middle of a crying fit, the intro theme to Yo Gabba Gabba does wonders in calming her down 🙂 She is making a lot of improvements in her physical mobility. She’s a pretty strong girl! We have amazing therapists that love Claire and work hard to help with her development.

We are so thankful for our amazing families that love on Claire and provide Nicky and I so much emotional support.  We have awesome friends that show so much love to Claire and to us.  Claire has cousins and little friends that are so compassionate and loving towards her, anxious just to be around her and make her smile.  You have no idea how much this means to us. We thank God for blessing us with a child that is such an image of beauty.

Like I said, it’s a mix of emotions but that’s what it’s like to love Claire.  To love Claire, your heart needs to break because of these seizures. It’s a tragic but real part of her life and we owe it to her to ‘hurt’ with these seizures. But to love Claire is to also embrace the beauty and joy that she is. To love her is to be overjoyed at all the moments in which Claire experiences happiness.

Our ultimate wish is that Claire’s seizures go away. We’ve got a lot of things in place to try to fulfill that wish. But today, I have a different wish on Claire’s behalf and I hope you can help.

So, what is my wish?

I said earlier one of the things that makes us so happy is when people show love to Claire. A lot of you do that so wonderfully, but I’m looking for something more unique today. Something that we’ll show Claire someday really soon and tell her ‘Look at all the people that love you.’

I want you all to say ‘Happy Birthday’ to Claire. I want you to REALLY say it. I want a photo of your face and a little message saying ‘happy birthday’. Or, I want a video of you actually saying ‘happy birthday’ to Claire. Twitpic ‘em or Twitvid ‘em on Twitter. Or use tinypic.com to upload it and send me the URL. Or just send them straight to me if you know how to. Blog comments are nice, but I’ll be honest and say that I’m really hoping to capture peoples faces with a message. I want a big collage of people saying happy birthday.

Again, I want Claire to see the people that love her. Selfishly speaking, it would also mean a lot to Nicky and I too.  More than you realize. So take a few seconds out of your day and really say to Claire ‘Happy Birthday’!

One final note… I’ve talked already about going through each day with the sadness that Claire’s condition brings but willing ourselves to embrace the joyous life we have with her. This song ‘New Day’ by Robbie Seay Band is an anthem of sort for us. It’s a reminder from us to Claire (and also for Nicky and I to each other) to enjoy the new days that God gives us.  Even on her birthday today, we’ll see seizures today (and it will suck), but it’s a new day and in the end it’s gonna be alright.

      1. rsb-newday.mp3

“New Day” Lyrics

I’m gonna sing this song
To let you know that you’re not alone
And if you’re like me
You need hope, coffee, and melody
So sit back down
Let the world keep spinning ‘round
For yesterday’s gone and today is waiting on you to show your face

It might not be
The prettiest thing that you’ll ever see
But it’s a new day, oh baby, it’s a new day
And it might not look like
A beautiful sunrise
But it’s a new day, oh baby, it’s a new day

I’m a pilgrim soul
I’ve traveled far and come back home
This land is hard and cold
For those who long to love
And I know it might seem
That the world is crumbling
But it’s me and you dancing in the kitchen at 2 am
And we’re still alive

It’s the calm of the storm that comes blowing in
It’s the springtime saying I’m back again
The clouds that roll by
Crossing moonlight
Me and you love – everything’s alright
Standing in the rain with nowhere to go
Laughing and we’re spinning and I hope that you
Remember this day
For the rest of your life
Me and you love – everything’s gonna be alright

And it just might be
The prettiest thing that you’ll ever see
It’s a new day
Oh baby, it’s a new day
If you look outside
To see a beautiful sunrise
It’s a new day

by | Categories: Uncategorized |

7 comments | leave a comment

  1. Kathy Acosta
    July 20th, 2011 at 2:15 pm #

    Adrian,

    I’m fairly computer stupid when it comes to sending these kinds of things…but we’re gonna give it a shot!
    Where can I email the link?

    What a great idea!

    Thank you!!

  2. adrian
    July 20th, 2011 at 4:38 pm #

    Kathy,
    You can send to adrianvender@gmail.com

    Thanks!

  3. Yasmine
    July 20th, 2011 at 7:59 pm #

  4. adrian
    July 20th, 2011 at 10:31 pm #

    Thanks Yasmine!

  5. Jen
    July 21st, 2011 at 6:49 am #

    Hi Nicky and Adrian. This is beautiful- what a great idea. I posted some B-day wishes (although I think a day late- sorry) on Facebook and tagged Nicky. I hope that is good enough. I hope Claire’s birthday was magnificent!

  6. Jen
    July 21st, 2011 at 7:31 am #

    Oh and what I mean by I hope that is good enough- is that I hope that you are able to copy and paste it to her collage- however if you are not, I can try to send it another way. I realized that my wording in the previous comment was strange. Lovely day to you all!!

  7. Zaida
    October 3rd, 2015 at 2:48 pm #

    About 2 months ago, my 4 year old cpoumter died; hence my absence. Please give this to Stacy:Primary Causes of seizures:Not taking meds as prescribed;Lack of sleep;AlcoholStimulants (coffee, candy, etc., i.e., sugarStressI’ve finally been seizure free for over 1 year: I’m taking 3 meds simultaneously:Trileptal, Lamactial; Tranxene. These really have my CNT shut down, but no siezures. The problems with them is numerous, serious side-effects: blurred vision, dizziness, loss of balance; loss of hair, weight gain, slowed cerebral functioning, etc. These wear off during the day following ingestion, but I’m not able to drive throughout much of the day.I took Dilantin for many years and had about one seizure per year. I then switched docs and he suggested Neurontin plus dilantin: no change. Switched again: Tegretol; continuing seizures; increased Tegretol: continuing seizures. Another doc: eventually started on the present regimen. I don’t skip them. The others, with the exception of alcohol (the combination is lethal), I follow the others for the most part.ADJUSTING THE DRUG REGIMEN ORDERED BY THE DOC IS ABOUT THE WORST THING ONE CAN DO.If you don’t believe me, ask the doc. (Everyone IS different, but for most people, diets alone don’t work and some drug(s) are also needed.God Bless you.

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