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

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i’m bugged

Oct 7, 2008

after months of bed rest/hospital/nicu craziness it’s been great to have all of us at home again and begin our new life as a family.  now that we’ve entered the fall season (which in phoenix simply means ‘less hot’) we would like to sit outside in our backyard to breathe in the fresh air.  also, it’s football season and when i grill i like to leave the door open so that lily and i can come and go as we please.

there’s one problem with this scenario: bugs. we can’t leave the backdoor open for too long before another fly enters the house and we busy ourselves chasing them for the next few days. then just the other day i discovered a new ant colony in our backyard. annoying.

one solution to these problems is to just buy some pesticide and get it over with but we’ve been trying to tone down the use of chemical products around the house. also, with claire’s array of medical concerns we certainly don’t want to add any more harm.  i also like do-it-yourself projects because of the challenge and cost savings. so i googled around and found eartheasy, which is a site that promotes ‘ideas for environmentally sustainable living’. i found this article that gave me some options for our ant and fly problem…

ants“Trace the [ants] back to their point of entry. Set any of the following items at the entry area in a small line, which ants will not cross: cayenne pepper, citrus oil (can be soaked into a piece of string), lemon juice, cinnamon or coffee grounds.” it’s a trap!

flies“Use mint as a fly repellent. Small sachets of crushed mint can be placed around the home to discourage flies.” i might use their custom flypaper instead but i’m sure this method smells better.

i will definitely try a few of these options so we can enjoy the outside again. i’m not going let flies ruin by football/burger experiences anymore!
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