Update Anyone?

You have been asking and I have heard, I promise. So here goes. And, as always, please e-mail with any specific questions. I am always willing to answer :)

Am I a horrible mother if I don't remember how many surgeries my baby has had? I am sure I could come up with the number if I sat down with my calendars from 2011 and 2012 and thought really hard about it. I'd likely need to enlist the help of my husband though. Keeping track seems to weigh me down. I stopped after number 4. Drat! There goes mother of the year, again.

We were hopeful after his latest (notice I did not use the word last, one tends to become cautious in these types of situations) surgery that we might have found the smoking gun. No smoke. No gun. In fact a very miserable baby that was worse rather than better. Recovery was more difficult and much longer than anticipated. It was just plain no fun at all. And then, a few weeks after ... out of nowhere (or rather out of a cute little baby bottom) what's that?! A diaper here and there, a day with 1 irrigation compared to 3-4, and so on, and so forth. Another pull-through operation is still on the table. Only time will tell if this is a significant enough improvement to call it good. For now we have 3 months to watch and wait and see.

He's done it folks, he's finally done it! Malachi has begun passing stool (or pooping for us common folk) on his own. It is very unpredictable and nothing to be relied on, but boy howdy we are sure celebratin' 'round these here parts. There are actually days without any irrigations; they are the exception, but sure are fun. We still have to be so careful and watch with vigilance in order to make sure we keep him out of the hospital and growing and doing well. But let's just say a big fat YeeHaw on account of progress!! YeeHaw!

There is always a concern, on my part, of how to communicate the milestones along with the fact that we are far from done with this journey. The time frames and expectations of others to be able to live a certain way, or do certain things, are quite frankly the most difficult part of this journey. It has been interesting to see how eager the human mind is to judge and decide what others should and should not do. And now I will step down from my soap box and get on with the celebration.

We have turned a corner that has significantly decreased the amount of work it takes to keep our little buddy well. His colon still rules and reigns and its function is very dependent on eating, sleeping and being irrigated on demand. We have noticed that later in the afternoon there is a bit more flexibility than the morning allows. Each day is different and we are still very much in a go with his flow pattern. We have long been settled into this routine and it is a comfortable and enjoyable life for us. We are staying the course and enjoying the opportunities we are blessed with along the way.

Malachi is a happy healthy 13 1/2 month old toddler that will challenge you to a good game of chase anytime you are ready. That's foot chase, not crawl chase mind you, and he's pretty fast so bring your running shoes. He loves being outdoors, eating big boy food (whole wheat pancakes, brown rice puffs, cheerios, carrots, peas, and green beans), and discovering all the simple pleasures life has to offer. He still needs a bottle of formula every two hours as that is where his nutrition comes from, the big boy food is more a social thing at this point. His siblings are still his favorite people with Dad and Mom a close second. We enjoy all that his life and disease have taught us and continue to be schooled each day.

In a world that is focused on the quick fix, the pill to cure all, the instant and sure, a world that says money and things can fix it all; in that world, we are learning to live a different path. A path of staying the course and riding it out. A path of seeing joy in and expressing gratitude for all we have. A path that leaves other people guessing and questioning. A path that brings our faith to the forefront while all else fades into the background. A path that is not of this world.

We are finding strength, security, comfort, and answers that are impossible to explain in a world that is so focused on temporal treasures. Our deepest and most abiding treasures are first; our faith in our Heavenly Father and His son, our Lord and Savior, Jesus Christ, and second; our beautiful family, within which we truly have all we really need.

The temptation to go outside of ourselves, our lives and what we have been offered, is great. The pull is sometimes overwhelming. And then. Some complete stranger, and sometimes friend, will out of the blue say just what is needed and offer an opportunity to refocus. It's amazing how clear things are when outside forces are not allowed to turn the dial. How fuzzy and disturbing it is to try and see yourself through another's focal point.

How exhausting and impossible to live so that others can see that you are doing it right. How cruel to our children that have to bear the responsibility of our own insecurities. Pretty little obedient trophies on our mantle they sit, just waiting for us to let go of what we think they should and should not do and be. All so we can show others how awesome we are. How awful and inhibiting to be on display. How amazingly wonderful to be in a place where that can't reach anymore. Most of the time. I am so thankful for unanswered and answered prayers. I am even more grateful for my Savior who always sees me through the best possible focal point and reassures, in so many ways.

Thank you for the support you have offered us. In all of your differing beliefs and ways. We truly understand and feel the blessing of having so much good thrown in our direction. It seems impossible that it has been over a year since his birth and the beginning of this journey. We are blessed beyond measure and are amazed at the many miracles that have been so graciously poured down upon us.

God is good. We are blessed. Your efforts on our behalf have made all the difference. Thank you.