Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

What isn’t

on February 22, 2012

I don’t often allow myself to indulge this line of thinking. But last week, on my second trip to Iowa City that week, I found myself thinking about what should have been.

Mid-February. I SHOULD have a 6 week old baby. I should be spending my days with homeschool and enjoying my kids. I should still be on maternity break from Wallypop. My kids should have had a fairly easy transition with a new baby, particularly with mommy and daddy there to help smooth things out. I should be nursing my baby throughout the day and delighting in his phenomenal growth from my awesome milk (just like his siblings). My afternoons should be spent playing on the Wii – an activity that was promised to Wally once the baby came, and that he has not even once complained about not getting.

And you know what I should NOT be doing?

Washing bottles, washing feeding pump parts, measuring medicines to squirt into my 10 week old’s stomach via a plastic tube. Driving to Iowa City for doctors. Leaving my kids at least once a week while I take their brother to the doctor. Watching my three year old become increasingly unable to deal with just life in general as her world has become so uncertain she can’t get her bearings. Listening to my seven year old tell me he understands why things are the way they are, but with such a sadness in his eyes that I turn away because I can’t bear to see it.

Researching, for the 40th time, prognosis statistics on infants with renal failure. Learning about the realities of our future – blood pressure medicines that cause gums to grow over baby teeth, completely nasty stomach bugs that cause diarrhea for months on end, exchanging worries about dialysis for worries about organ rejection. Calling home health, doctors offices, SSI, social workers, central line nurses, gtube nurses, and WIC.

Not even three months ago, I was still pregnant.

Such a different world I live in now.

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3 responses to “What isn’t

  1. Stacey Feehan says:

    I want to cry for you. I don’t have any sage advice, just want you to know that I’m thinking about you. I will continue to pray for strength for you, the rest of the family, and of course for Teddy. Lean on your support group.

  2. Megan says:

    Oh honey, I just hurt for you. I’d love to tell you it gets easier and in some ways it does, but I still have these moments. Not as frequently, though. It can hit out of nowhere though. I just had a friend over with a 4 month old. I was doing fine until she started to coo. I had to stop mid sentence to choke back the tears that I’ve never heard my little girl coo. I’m so used to the “noises” she makes with her breathing, I forget it’s supposed to be different, but hearing that little one….I seriously had to fight back tears all day. I’m praying for you and Teddy. Praying for both of you to have the strength to meet the challenges ahead.

  3. Holly says:

    Always thinking of your family and your struggles. Teddy is an adorable baby and you are one strong mama. It’s ok to complain – you are doing a great job for him! đŸ™‚

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