Big Bed, Little Boy

Wow, what an eventful 24 hours. We are in the ICU with Malkolm. Only parents and grandparents are allowed to come in, and only two at a time. I am emotionally drained, physically drained, but in a way uplifted by so many who have been affected by Malkolm's story and his heart (not literal heart, but I guess that sort of applies too). We have had little celebrations, like being taken off the breathing machine at 3:45 this morning -- and just about 15 minutes ago, the feeding tube came out.

He is slowly sipping apple juice and it's staying down which helps a lot with his spirits.

Since the article came out in the Atlanta paper, Malkolm has turned into a bit of a celebrity here, even though he's mostly unaware of the scope of this. I'm not totally sure how much he understands about what he has started with this idea. Not just the funds coming in from his story, but moreso the message that his faith and his writing brings with it.

I do want to make sure everyone understands that when Malkolm had the idea to sell his story to help pay for his surgery, we did not expect or even imagine that it would be like this. We were prepared to pay for the surgery using whatever means possible, because this little man is our baby (and a pretty cool kid, I think I'd like to keep him around for a while!! ), but I have to admit, not having to worry about my missing work and just being able to focus on Malkolm is a big deal, and a huge blessing.

As a work-at-home mom, I work more hours than I care to admit, at odd hours, many times into the wee hours of the morning. I do this because being around my kids, being available to my kids is something that is very very important to me. I missed SO much of his first three years because of my work (not working from home). If I had a dollar for every time someone told me "Hey Jenn, you don't live to work, you work to live ..." well, I guess I wouldn't need to work then, eh? (But knowing me, I probably would anyway).

I also want to make it clear that even without these funds from Malkolm's auction, we would have had the surgery anyway -- I'm concerned that some people might think that if we didn't raise a certain amount of money that he wouldn't have had the surgery, and that's just not the case. Although we are on a never-ending payment plan for our medical bills (my youngest was born 30 days early, and we spent a week at the NICU in Macon), we make it work and like everyone else, we do the best we can with what we've got. And we are unbelievably blessed with three amazing children, a strong support system of family and friends and the many other intangibles that go along with these things, money or not.

You know, when you have kids -- when you have it in your spirit to bring these little people into the world, you don't ever think that you will spend time in an ICU following heart surgery. Heart surgery is something that happens to older people, not children, right? However, from the lovely notes of encouragement I have received, I have found that MANY children have heart surgery and I can totally relate to everything that their parents are going through or have went through and I have appreciated each heart-written story of how their children have fared.

When Malkolm had this idea to sell his story; this 9-year-old didn't really have an idea about cost or anything -- he just wanted to help. I'm so thankful for my friends on the Ebay powerseller board, without their encouragement, we probably would not have done this, and it definitely would have not gotten around like it did. My friends, most of whom I have never met in person, are part of a community of people who banded together in vociferous support for my son and his idea and I don't think I can ever fully repay their kindness.

I am still laughing about our first night with the Ebay listing, Malkolm and I watching the notifications pop up announcing each new sale, high-fiving each other till 1 o'clock in the morning while the rest of the house slept, with me sprinkling words of encouragement in there (Malkolm, don't worry if you only sell 20 stories -- this is still really neat!! etc etc).

Ahhh, well. For now, we'll just focus on him getting better. He's proud of his "pain button" that he can push when he needs it, and he's not needing to push it very often at this point, so I'm pretty happy about that.

We're getting kicked out now for about and hour and a half while the docs do their rounds, so I'm going to close this long and somewhat rambly post now.

I'm just looking at him laying in the bed here -- this boy who is so much bigger than the little boy I have in my head, and yet so much smaller than this bed he is laying in. The bed makes his chest look not quite as broad and his hands look not quite so strong. I can see he is turning into a man right before my eyes, but he is still my baby. Always will be my baby.