The boys and I came to Walla Walla on Saturday to spend some time with my parents while Aaron is out of town.  Micah is having a lot of fun here; there is a new flower-bed in progress outside that functions as a giant sand-box!

We had to put Matthew’s NG tube back in last night.  We had a really nice break from the tube for a few days, but even though he was eating well, he wasn’t quite getting the amount of calories they want him to have.  We would prefer that he not need the tube, of course, but Matthew really doesn’t mind it very much once it is in place.  And, we all get more sleep now, to!  We have a pump that continually feeds him through the night, so we don’t have to wake him up for feedings.  He eats quite well during the day, but would fall behind at night because he was too sleepy to eat.  (We’re the only parents we know who woke up a peacefully sleeping 6-month old in order to feed him!)  We joke that Micah should have had a tube at 6-months when he was still waking up every couple hours to eat!  🙂  We are thankful that this is just a short-term need, and once he has recovered from surgery he will have the strength and energy to eat and grow all on his own.

Aaron and I are gradually recovering from the emotional whirlwind of the past 11 months, and adjusting to the fact that instead of losing our baby, we will be raising Matthew.  Before we learned the miraculous news about his heart, it was too difficult to read or learn much about Down’s Syndrome, but now we are feeling ready to learn what we need to learn in order to be the best parents we can be for Matthew.  I recently read an article by another mom of a child with Down’s Syndrome.  It is a very good article, and she expresses many of the same feelings we’ve had with Matthew.  The whole article is worth reading (click on the “First Things Article” link to the right), but her concluding sentence especially struck me:

“all of life is fragile and uncertain, with potential for heartbreak and potential for great joy.”

That is so very true.

Thank you all again for your prayers.


2 thoughts on “Monday

  1. Amy! You should totally read the book “Expecting Adam” by Martha Beck. If I remember right, her son has Down Syndrome, too. And if you need any good info, my mom has worked with people with disabilities for over 20 years and I know she can give you tips on all sorts of things, including getting state assistance and whatnot. Let me know if you want me to hook you up with her.

    I am SOOOOOO happy for you guys, and have been praying for you like crazy. What a miracle little Matthew is–God has great things in store for that boy! 🙂

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