Day Thirty-two – There, but for the Grace…

July 14, 2008 at 11:26 pm (daily life)

http://www.caringbridge.org/visit/gmantxfund

That’s a link to a caring bridge site for a little guy who, like Emily, has CF.  He is just a little older than Isabelle.  He has had a rough, very rough go of it lately, and, in fact, is being moved to the top of the list for a lung transplant.

His  mom belongs to the same CF web site that I belong to.  The site has been the  biggest source of support, help, information, help and comfort for me in this daily battle with CF.  I hesitate to even  call it a “battle” because if you visit Garran’s site, and you  are at all familiar with  what Emily has gone through, you’ll see that there’s a vast difference.

We have not begun to battle.  We haven’t done a stint in the hospital longer than 5 days, yet  (excluding the initial NICU stay).  We haven’t done home IV’s, yet.  We’ve not dealt with a collapsed lung or bleeding, yet.  We have not had to decide whether to home school or risk the  infections that inevitably come with being in a public setting. We have not had life-flights or ambulance rides or heard the words “Lung transplant” spoken about our daughter, yet. 

I can not begin to fathom what Garran’s mom and dad are going through – what they have been going through for so long, now.  I can’t imagine what they are saying to their older children about the youngest member of the family.  How do you  explain something that there just aren’t adequate words for?  How do you  put your life on hold to care for your baby?  How do you face something like an eventual lung transplant, knowing that even a lung transplant will not guarantee a long and  happy life?

I couldn’t get Garran off my mind today.  I spent a lot of time checking for updates on his condition.  I prayed often.  I cried, often.  I pulled away from some social things  I  might  have otherwise enjoyed, because I worried that I wouldn’t be able  to turn off the tears.  My girls saw me crying. 

I don’t dwell in the CF sorrow that used to consume me.  At least not often.  But today, this week, this month, in fact, it’s  going to  be hard to  escape.  Tomorrow marks one year since another of our CysticFibrosis.com members lost her fight.  Debbie’s death hit us all hard.  She was young, vibrant, funny…I LOVED chatting with her and exchanging messages.  She had a way of crafting her words so that you felt you were in the room with her, that you had always known her.  I cried for days when she died, and I still have moments when something reminds me of  her  (like the junk e-mail about shoes today…thanks, Debbie).  The end of the month will mark three years since the very first person I ever knew with CF died.  My good friend Mary’s dad lived a very long, full, rich life  with CF.  Until Emily, he was all I  knew about CF, and that was not much.  I was pregnant with Emily at his funeral.  I couldnt’ stop crying  that day, either.

Days like today, I am all too aware of the huge question  mark that lights up like a neon sign and  hangs in the air above my baby girl.  I can not hlep but wonder if I, in a few years will be where Garran’s mom, and Kaylee’s mom ( http://www.caringbridge.org/visit/kayleemaze)  and Haley’s mom (http://www.caringbridge.org/visit/haleypalmer)mom and  Gina’s mom(http://www.friendsofpepe.blogspot.com) are now.  I can not help but wonder if Emily will die before she gets to have  all of the coffee dates that she had arranged for the  next weekend, like Debbie.  Or, if  she  will get to see her grandchildren, like Tom.  The only thing that  is certain is that CF will, and does, fill up a lot of space in my life.  It is in charge, no matter how hard I try to pretend it’s not.  I  can’t  control it, I can’t battle it, I can’t defeat it.  I can’t save Emily from it. 

So, today I was short tempered, and with-drawn, and  weepy.  Tomorrow  I will right the  wrongs I might have committed today.   I will pray, I will smile.  I will try my best to remember  that even though she has a disease that will rob us of precious time with her, Emily is here today, and that’s  reason  to celebrate every minute.

Will you please take a moment to pray for Garran tonight?  And  for Gina.  And Kaylee and Hayley? And Emily.  And everyone who fights this fight, every day.

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4 Comments

  1. Jane Napolitano said,

    Tami,
    This is a beautifully expressed illustration of the sorrow CF families face during their battle with this ugly disease. (Although no one can really understand until they are walking that path).

    Thank you for sharing it.

    Jane

  2. Debbie (CF Forums) said,

    Tami, I totally know where you are coming from. I feel the same way you do about “The Battle”. Though, ours has begun, it is in no way nearing the T word, so I feel guilty complaining about the “little” things that are going on with Cheyenne.
    Thanks for posting this, so we can all let you know, you are not alone.

    Breathe Free, Debbie…we miss you.

  3. Beverly said,

    Thank you for this post. You have expressed so well what we all must feel, faced with this monster called CF. My little granddaughter has not had any bumps in the road yet, and I look at her in her innocence, laughing and playing, wondering when the shoe will drop. Hugs to you all in the CF community.

  4. Elise said,

    I hear ya sister. Somedays I have to completely separate myself from CF. I can’t look at the blogs, the boards. Sometimes it is just too much. You expressed so beautifully how it feels to be a mom all too aware of the struggles of CF, and hoping with all our might that we will be the lucky ones. Hugs to your girls.

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