Just When You Think You're in the Clear

Malachi has been doing fairly well the past couple of days. He is getting more and more used to irrigations again and the pain is subsiding. His colon is much happier than it was and that is a good thing. We have a saying around these here parts; "Happy colon equals happy Malachi."

What makes a happy colon? Emptiness. He is so sensitive to being full and has been since birth. We have learned that the hard way. Even 5 months in, we are still learning it; the hard way.

Take today for instance; we are finally done with Belgium, Sam has a brief break from inspections, Sam is home for the weekend, it's Jakey's birthday tomorrow and we are celebrating today, and today was the day we chose to get the aquarium set up. Daddy's aquarium is a family affair and we weren't able to set it up in Belgium. After almost three years without little fishies we were all so excited to get some occupants for the freshly washed and readied aquatic paradise.

Malachi was fed and seemed settled enough to be okay in his car seat, and so, at the last minute, we decided to just go for it and all jumped in the van to choose our new pets. By the time we arrived back home it had been three hours since his last bottle and he should have been screaming for food. He was due for an irrigation about 1/2 an hour after we left but I didn't think much of it and told myself I'd just do it quickly when we got back. I noticed him cough, gag, and choke at the pet store but I wasn't present with him. I got him through it, wiped up the spit, and didn't think much of it. I was wrapped up in the world and didn't recognize the warning signs that things had gone too far. I wasn't present with him.

When we arrived home and he wasn't squawking for food it tickled something inside me and I started coming back into focus. When he started crying a few minutes after arriving home and he would not drink his bottle, I was hurled back into optimum view, and being present, finally, I knew what he needed. Unfortunately, when I laid him down he started heaving violently and throwing up bilious gunk. It really helps you refocus quickly when you recognize that harm could have been avoided had you just chosen to remain present, and not lost focus. Lesson learned. Sorry little guy. So sorry.

We know better. We had no business taking him out, and we knew it. Sometimes you just think you can get away with it and then we are quickly reminded that this rules our life at the moment. The stress doesn't come from not being able to do things we could at one time, it comes from trying to live a life that isn't ours at the moment. Malachi's health and well-being depend completely on our willingness to be where he needs to be, and do what he needs, when he needs it. He needs what he needs when he needs it. He is not portable and who knows when he will be. We know that. We know what's best and we chose differently.

I haven't been to church in months because when I did go we would spend 3-5 days with a miserable baby playing catch up. We know better. I pretty much don't go anywhere unless the timing is perfectly coordinated with when he needs to eat and be irrigated. We know better. Let me tell you that's not easy to work around; with eating every 2 hours, needing to burp and be upright for the better part of the time between feedings, and irrigating every four hours, there just isn't more than a few minutes here or there to get anything done, much less run errands or have an outing. There just isn't time. Never the less, we know better.

He is doing better now. We will play catch up for a while, but he is eating again and sleeping comfortably. It never ceases to amaze me how our other 4 children are handling all of this. They are so loving and kind and do not act, in any way, like they are being put out or deprived of things. They find joy and happiness all around them and they are so grateful when a playdate or fun activity comes their way. They take full advantage of what surrounds them in the moment and are truly present in their own lives. It's amazing to watch and be a part of.

Over the last months people often ask how they can help, or what we need. Honestly, truly and deeply, from the most honest place I know to exist within me, I can say that all we need is for people to be present with us. It is one of the most blessed things I know to feel that time and space, distance and circumstance, have no control over being able to be present with another being. We feel, in such a tangible way, the support of so many. It has come in many forms through many different people, near and far, and we are so blessed. This experience has taught me so many things, but perhaps the thing I feel most strongly is that when we want to, when we really want to, we can be one with each other without any effort at all.

Being present in my life, and present with my children and my husband is paradise beyond anything I could have imagined. And we don't have to go anywhere, or pay anybody, or wish for more and better, because we have the best right here, all the time.

Perhaps that is all we ever need to understand. All is well. All is good. All are welcome. All are cherished. All are needed. Always and in all ways. Perhaps.