Wednesday, January 2, 2013

Hard Work and Health

I wouldn't read this if you're looking for something uplifting. But I just feel like it needs to be shared.

- - - 

Keeping an I-Cell child alive is a lot of work.

Fear of oxygen cords popping off. Chronically checking the tank regulator's dial to ensure it hasn't been nudged ... landing between two settings that shuts the valve off... shutting off our daughter's air supply.

Did we bring enough O2 for the trip?

Lying in bed, dead tired, almost asleep, and hearing your daughter cough, hoping it's not a bad plug. The cough turning into an abrupt silence. 5 seconds pass. An eternity. The sat machine goes off. Levels dropping. Jumping out of bed. Lift her up. Suction machine. Crank up dial on 3-foot-high O2 tank that takes up a good portion of her room.

Feeding her mushed up food knowing that every cell of nourishment won't be stored by her body properly. Every bite progressing the disease. The work of it all. Both for her and for the parent.

The brittle bones. The scoliosis. The kyphosis. Other kids running around and jumping. Wincing and hoping that they don't land on her and crush her. One wrong step. Oh god.

The hands that don't work properly. Those beautiful hands that hold the entire world within them. The ones that need braces put on them when she sleeps so she doesn't lose her range of motion due to the disease contracting them permanently.

The deafness. The near-sited partial blindness. The dislocated hips. The rib-cage and sternum that breaks your heart every time you look at it. Wondering how much pain is she in? Any? Is she just used to it?

Turning the sat machine off some nights at 4:45 in the morning b/c you just want to sleep for a couple hours. Hoping that she'll be okay when you wake up. But the guilt you feel when you see her lips a pale blue in the morning.

The fear of flus and fevers and other people's colds. Knowing that your daughter is a bad cold away from passing has become normal. A crazy normal. But not wanting to bubble your family away in protective fear forces you to come to peace with this reality. Someone's bad sniffle could take your baby girl's life. The worrying becomes normal. A normal not many can understand.

The cries. The bone-chilling, heart-breaking cries that make you want to give your life to take the disease away from her. Cries that – as much as you try not to – make you want to cry with her.

The sadness. The long goodbye that you don't want to end but know has to.

The life lessons you didn't think you would learn until your 70's or 80's, if at all. Seeing the finality of everything by coming to grips with your child's mortality.

The distance in perspective that grows between you and what seems to be everyone else ... except for other parents who've endured the chronic sadness of slowly losing their child to something beyond their control.

Keeping an I-Cell child alive is a lot of work. It makes me appreciate my own health. The good health of my other family members. It's a phenomenal gift so many of us take for granted. I wish I could give it to my daughter.


  1. I didn't read your warning intro, and now the tears won't stop. it's amazing how you can almost forget for a minute and think everything is normal. Yes crazy normal. But it doesn't take long for reality to set in and for everything to come crashing down. My heart breaks for you, for Gabrielle, for my I-cell baby, for me, for my older son who will one day in the not too distant future have to deal with the death of his baby brother, and for everyone in a similar situation. Life can really suck sometimes. Thinking of you on this journey of ours. xx

  2. Regan,
    To you and your family, I'm so sorry you have to go through this with your daughter. I see your struggles whenever I visit my friend who has 2 I-cell babies. The parents are so young. I don't know how they do it. "The distance in perspective that grows between you and what seems to be everyone else ... " What a true statement that can be. I know that same feeling when my son became disabled. Many times I just wanted to say to people "you don't get this or ever will" but instead hide behind the fake smiles we all have pretending we're just happy to have him. Well, I'd be happier if he was healthy and able. I wish I had some comforting words for you. Sometimes we just need to say that life dished us out a raw deal and it sucks.

  3. Hi, I'm Michelle's mom, Mary-Ellen and Michelle sent out an email for prayers for your daughter and your family as you walk the steps in your shoes.
    Your precious daughter is loved so deeply by you and your family, along with many others she hasn't even met.
    She will be in my prayers every day.
    Your life does sound like an immeasurable amount of hard work and constant worry and it has to be so hard. Every moment of care you need to give your daughter is so full of your love and dedication to her well being, but never forget how much she loves all of you for every moment of that loving care she receives.

    Gabby is an amazing and brave little girl.