Being reminded

Lots of emotions are going on inside me right now: thankful, curious, worry, exhaustion, delight, happiness, and frustration all at the same time.

Anderson finally appears to really be on the road to recovery from his surgery. I know the last post sounded like he was fine right from the beginning, but to back up just a little...the day after surgery was fabulous. He seemed to not be in much pain and was back to his smiling little self. Then Thursday (2 days post-op) was awful. Just by looking in his eyes you could tell he didn't feel well. He cried every time I moved him like I was hurting him, but he didn't want to be laid down. He wanted to be held, so I held him. His soft spot became full just like before surgery, so there were concerns that this shunt had already decided it didn't want to work. And that night he started with a fever. It got to 100.7 even with all of the Tylenol he was on-but we weren't to call the doctor until it got to 101.5, so I was on fever watch all night.

On Friday, his fever went away without ever getting any closer to the "magic" number. However, he still was not himself. He cried a lot, wasn't eating really good, and just wanted to be held and not move. He wasn't smiling much and just looked miserable. It is absolutely heart wrenching as a parent to see your baby in so much pain and discomfort and know there is nothing you can do to take that pain away. In fact, I would say that this experience has left Jamie and I both emotionally exhausted.

Saturday was a little better. He still didn't want to move around a lot, but he did start smiling more and crying less. He acted more like himself. We were so thankful for the improvement.

Sunday was like a roller coaster. One minute he was happy, smiling, and giggling, and not 5 minutes later he was screaming his head off and we couldn't get him calmed down.

Overall today was the best day we've had since the day right after surgery. He does still want to be held all day, but his demeanor is back to normal and not much crying (except when I put him down).

We are thankful that his surgery went well, we are thankful that he is finally recovering from it, and we are anxious to see the changes we will see now that his new shunt is functioning properly.

With Christmas approaching, we are definitely counting our blessings. We know we have been blessed beyond measure with all of our children, but especially Anderson. He truly is a miracle baby.

However, this most recent surgery has also brought some worry and fear to the forefront of my mind. I worry about his development. I worry about how long we have until this shunt quits working. I fear that he will not hit milestones both physically and verbally. I fear that I will let myself be overwhelmed by comparing him to typical children his age. I know that he is capable of everything a typical child can do, but what I must remind myself is that his brain is different. He is going to move at his own pace and accomplish things in his own time. I know that in the grand scheme of things it does not matter at what age he rolled over, crawled, walked, spoke his first words, etc. I don't think any of those questions are on job applications. I fear that I will miss out on the little things by being so concerned with the bigger things.

I don't want to be this way. I want to be the strong, courageous person with faith that can move a mountain. Most of the time I do feel strong. I do feel God's presence and know that he is in control and knows what lies ahead for our family. But sometimes, I allow myself to lose focus on God and focus on life. And when I focus on life, everything starts to fall apart because I know that this is bigger than I can do on my own. So there are times that I must remind myself that God is in charge. And I have to tell myself that He is the healer and he knows exactly what is best for all of us. And I must refocus everything I have on him.

Sometimes he reminds me of this in subtle ways, other times he nearly shouts at me. Tonight I had been reading a blog written by a mother whose son has ACC like Anderson. There are a few differences in their diagnoses but also some very similar conditions. This boy is about 14 months older than Anderson, and as I read their blog, I found myself questioning if Anderson was headed in the same direction with the same challenges. I decided to put the computer away for the night, and catch up on some reading. I was a few days behind in the book Jesus Calling by Sarah Young. (If you don't have this book, I highly recommend it!) Anyway, when I got to the reading for today, this is what I found:

My plan for your life is unfolding before you. Sometimes the road you are traveling seems blocked, or it opens up so painfully slowly that you must hold yourself back. Then, when time is right, the way before you suddenly clears- through no effort of your own.....
....Do not fear your weakness, for it is the stage on which My Power and Glory perform most brilliantly. As you persevere along the path I have prepared for you, depending on My strength to sustain you, expect to see miracles- and you will. Miracles are not always visible to the naked eye, but those who live by faith can see them clearly. Living by faith, rather than sight, enables you to see My Glory.

That couldn't have come at a better time. I must remind myself to live by Faith- not by sight. I have to remind myself that God's plan for my life will be revealed in it's own time. I must sit back and relax, enjoy the ride, and not miss one single second by worrying.