Sometimes it’s not easy to be Danny

Actually, it’s probably never easy to be Danny.  Lately he’s been more cognizant of his disabilities and gets more frustrated than he used to. 

Even when you can go zooming through the hospital and show off for the nurses about how your new chair can do wheelies, the time eventually comes when you have to get your IV started… (see photo on top… calling Daddy at work to tell him how hard it was but that he was brave)

Sometimes he just feels so tied down… with his oxygen and tubing and connectors and humidifiers and his braces that require special socks and shoes and skin checks and cast appointments and his feeding tube and his tubie juice and the bags and the pumper that beeps in the night….

and the monitor that has to get stuck on and beeps when your oxygen is too low, and beeps when your heart rate is too low, and beeps when your heart rate is too high, and beeps when you move too much when you’re sleeping…

And even though in general he really likes his Mic Key button… he knows it’s the reason why he’s been getting so tall, and he likes never, ever having to swallow icky tasting medicine or his metabolic formula, lately he’s been in pain from it almost all the time.  He’s been having bleeding that we aren’t sure how to stop, too. 

So we’re here in the hospital to have some surgery tomorrow, and to get a good look at the inside of Danny”s esophagus and stomach, to take some biopsies, to do a balloon dilation of some scarred parts, and to generally put things back the way they should be.  But when you’re only eight years old, even when you’ve been in the hospital lots of times and had lots of surgeries, it’s still not easy.

One thing that has really helped, though, has been all the emails and the visits to his website this week.  Every time he started to get anxious, we’d send him to the computer, and there would be another contest entry or another new visitor to his site.  It’s amazing, all the worry would be totally forgotten.  My ever-so-thoughtful  friend Ginny sent LOADS of friends over to www.paradeschool.com , and I think really saved my sanity. 

The other thing that really helped was that Danielle’s son, Thomas, took Danny into church right before we got admitted and helped him light a candle by the statue of St. Ann, on her feast day , of course, right before the big Latin high Mass with the bishop and everything.  It was really sweet and made me happy too. 

And now I have to get to sleep, I’m sure there will be lots of beeps in the night, and I’m sure the nurses will be in and out often… but wish us luck in the OR tomorrow.  Pray for boring.  When it comes to surgery and anesthesia, boring is good.

19 thoughts on “Sometimes it’s not easy to be Danny

  1. My prayers for Danny and all of you especially at this time. I’m glad others went to his page. I was happy to send an email. He’s the same age as two of my grandchildren and I know just how much they like emails and cards etc in the post just for them.

    I think I originally came to your site from Ann Voskamp’s site.

    Jan (Australia)

  2. Oh, Elizabeth… upholding Danny and you before our Jesus, who ever lives to make intercession for us… I can hear his voice and see how you tenderly love him and God is so good to give us to each other.

    Will you give Danny a big hug from me? Us all loving on you both, and knowing Jesus carries you all, His love supreme and perfect and we’ll abandon the worries and abide in Him…

    ((you all))

  3. I’ve been setting my kids loose on his website since your last post. Our family’s prayers are with Danny, his doctors and you and your family during this stressful time. I hope yup can fond a boring peaceful day to day very soon.

  4. I hope everything went well and that it was very boring, boring, boring! As usual thoughts and prayers are being sent your way for all of you.

  5. You know you are always in my prayers, but sending extras for Danny. St. Ann is my patron saint, so i’m leaving her with many intersessions.

  6. Betsy English is my doc and I am a spinner when I am well; she told me about your site. I do feel for your little Danny; I worked for years with little fellows like him and my heart goes out to you. I also have been diagnosed with cancer so a double whammy….thank you for being there and sharing in a wonderful way, it moves me to tears to read you description but it also is inspiring as children can be.

  7. In addition to letting you know I’m praying for Danny and the rest of you, I wanted to share with you. A friend from facebook introduced me to your blog. I pray often for the struggles your wonderful family endures so gracefully. But you also give me hope and strength for my family. I see all that you yourself have gone through, and all your children go through. I see smiles and laughter and above all love for each other and love for our Father. Thank you for the days that I think my struggles are so hard, then I come here and realize that we all have struggles, some harder than others. Thank you for helping me realize that no matter how hard our struggles are, we determine if they defeat us or not!

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