Out with the old...

It definitely feels as though Emma is entering into a new phase in her life. Leaving behind infant/toddler-hood and becoming a "pre-schooler."

We have said goodbye to many of the issues we faced in Emma's early years and with them the concerns that we had in the early days. We never really looked too far ahead because we didn't know what to expect, and dealing with the present is more important.

Today Emma had a follow-up with the ENT doctor and she was very pleased with Emma's progress. No new ear infections to report was excellent, and on target with her age. Her tonsils are small and though there is some abnormality in her nasal passage air can get through (though Emma does not breathe through her nose.).

The doctor also noted improvement in Emma's speech and oral motor. Apparently many kids with Moebius have limited ability to open their mouths wide, even requiring surgery, but Emma has improved - it had been an issue early on.

We had another hearing screen too, just to confirm the "normal" results of the test in November. It was pretty funny. Emma would not stop talking!! On one test she had headphones on and had to throw a block in the basket when she heard a sound. When she heard it she said "I hear it!" rather than just doing it. When the sound was taking a while "I don't hear ANYTHING yet!" and when the audiologist said the next sound would be a frog Emma's comment was "THAT sounds like a frog?!"

She might also be the only kids to yell "Yay, I'm so excited! Let's go!" when she was called back for the hearing screening. I'm a pretty good spin doctor on the medical stuff, so Emma loved the "listening games" we played!! (Speech Therapy is "Games" and Physical Therapy the "Playground room" at "School"!)

We did manage to get a result which was "normal" and so Emma won't need to go back to ENT or audiology!

So, looking ahead... yesterday I got a call from the board of the school we want to send Emma to. After receiving our registration forms they are concerned they won't be able to provide all the support Emma needs. So they want to meet with us, and are coming to our house (!) tomorrow night for a meeting!

I am so used to dealing with Emma's additional needs that maybe the don't seem like a big deal to me? I certainly was naive enough to think that all the big issues were behind us. It's quite likely we will have to battle for the things we want for Emma, I just hadn't bargained on it being so soon.

I'll let you know what happens at the meeting, but I am trying to convince myself that it's worth going to the wall for things that aren't essential (like pre-school) to prepare me for the big ones!

I had a great chat on the phone with the woman organizing the 2012 Moebius Conference in Philadelphia. I'm going to help out anyway I can. She has a 9 yr old son with Moebius and we discussed some of the issues they had with schools and therapies. It was so awesome to speak to someone who knows EXACTLY what Emma has faced and might have some coaching for me.

I had this daily devotional when I got home, it was perfectly timed and I look forward to sharing it with her one day...

“If any of you want to come with me,” he told them, “you must forget yourself, carry your cross, and follow me.” Mark 8:34 (TEV)

When we suffer, we can cling to the truth that God is not surprised. We do not suffer outside the sovereignty and power of God.

We can rest in his promise that he has our best interest at heart and so, when suffering and rejection come, we can obediently trust that our suffering is not an accident but a necessity used by God to lovingly squeeze the things out of us that we might otherwise ignore or excuse -- the sin, disobedience, and apathy that we like to think isn’t so bad.

And this is why Jesus so often addresses the weary and brokenhearted (see Matthew 11:28-30). In a sense, ‘Come to me if you are desperate because only desperate men and women are willing to suffer for my cause.’

They alone understand God will give them “treasures of darkness and riches from secret places, so that you may know that I, the Lord, the God of Israel call you by your name.” (Isaiah 45:3 HCSB)

Consider this: The cross did not just happen to Jesus; it was part of his purpose for coming to earth. Suffering does not just happen upon you; God uses it to help you fulfill the purpose for your life.

You may face suffering even as you walk obediently. Don’t let it distract you; instead, let it drive you deeper into the heart of God. Even if you can’t see the work of God’s hand, place your faith in the loving and good nature of God.