The Next Phase ...

I haven't updated on this in awhile, and mostly, that's because there hasn't been any news. BUT, this week, that all changes. We finally got the go ahead from our insurance company to have Drew's blood drawn for his Chromosomal Microarray Analysis (CMA), the next step in our journey. For those of you new to the blog, we are trying to determine whether Drew has Noonan Syndrome, a single gene disorder that could explain his CHDs.

Here is a link to an article written nearly 3 yrs ago:
http://www.sciencedaily.com/releases/2007/03/070329092046.html

CMA has come a ways since then, but it remains only 5 yrs old and they are still working out the kinks. I believe the percentage has gone from 5%-12% to 5% to 25%. Meaning, they can successfully prove a single gene disorder in this percentage of cases. BUT, this does NOT mean that it rules it out if we get a negative result. So, yes, it's still kind of a crapshoot. And, of course, it is also highly likely that Drew's CHD are spontaneous and not genetic. For that matter, it is also possible that NS, should he have it, is spontaneous as well. But, should Drew have NS, he has a 50% chance of passing it on to his children...and should one of us have it, we face those same odds. We have already been advised to seek genetic counseling when we decide to have another child, as should Drew when he is ready for that chapter in his life. For these purposes, it would be nice to try and see if there is indeed a genetic reason behind all of this.

You would think this would make perfect sense to anyone hearing our son's story...his two CHDs, his multiple "congenital anomalies," and his EKG readings. To our Cardiologist, they all seem to point to NS or something similar to it. To our Geneticist, they are intriguing enough for him to want to follow up with Drew during his childhood, even if these tests don't prove anything one way or the other. To someone checking dollar signs, they need more "proof" than the word of the professionals before allowing us to attempt to rule something out, or prove it to be true. I am sorry if that seems cynical, but we've been dealing with this since July. It will be yet another month before we have our results and those might not even prove anything.

And so, I must call again upon the Serenity Prayer. Can I do anything about any of this? No. Does worrying about it help anyone? No. Do I know everything will still be OK, regardless of what these tests prove or don't prove? Yes. God is still God, He is still beside us, walking this journey with us. I have to trust in Him, even when it's hard, and lay my burdens at his feet. Even as they poke and prod my son, yet again, I know He is good. I might stumble and fall, but He will pick me up and carry me when I need Him too.

Psalm 121

1 I will lift up my eyes to the mountains;
From where shall my help come?
2 My help comes from the LORD,
Who made heaven and earth.
3 He will not allow your foot to slip;
He who keeps you will not slumber.
4 Behold, He who keeps Israel
Will neither slumber nor sleep.
5 The LORD is your keeper;
The LORD is your shade on your right hand.
6 The sun will not smite you by day,
Nor the moon by night.
7 The LORD will protect you from all evil;
He will keep your soul.
8 The LORD will guard your going out and your coming in
From this time forth and forever.

And something to remind of of this Christmas season ...

“But the angel said to her, "Do not be afraid, Mary, you have found favor with God. You will be with child and give birth to a son, and you are to give him the name Jesus. He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over the house of Jacob forever; his kingdom will never end.”
- Luke 1:30-33

How right it is for me to be mindful of Mary as I walk this journey with Drew. She suffered the ultimate loss, the death of her only son...my situation doesn't even compare. Mary accepted God's will in her life; and with an open heart, she welcomed Jesus into her womb. "Thy will, not my own, be done." She knew she would face potential ridicule, and yes, even death, as she was not married at the time of her conception...but she trusted in the Lord. And He took care of her. He had given to her a righteous man, Joseph, who loved her and allowed God into his heart as well. Mary was truly a blessed woman, and yet she suffered a great deal in her lifetime. She is the ultimate example of a mother and of allowing God's will to be done, instead of constantly attempting to force our own desires.