hard days

I am writing with a mix of heavy heartedness and hopefulness. I think the past 5 weeks are finally starting to catch up with me, especially in light of the news we received Friday afternoon. I received a call from the geneticist at the hospital and she stated that the results of Asher's chromosomal tests were in. I could tell by her voice that it was not the news we were hoping to hear. She said that there is a deletion on Asher's 15th chromosome, which correlates with a syndrome called Prader-Willi syndrome, and a diagnosis had officially been made based on the results of the tests. I couldn't even speak and I literally felt like I was going to be sick. Doctor's had referenced this disorder as a possibility already and I knew enough about it to know that it wasn't good.

So here we are, 3 days after hearing this devastating news. I have a mix of emotions that seem to change at any given time. We are meeting with a genetic counselor on Wednesday to further discuss the diagnosis and what action we need to take at this time.

After spending about 10 minutes googling it (very scary), I learned a few things about Asher's diagnosis. The part of the brain that registers hunger does not work properly in people with this disorder. They suffer from extreme hunger that is really never satisfied, which often kicks in somewhere between 2 and 6 years of age. Because of this, these individuals often suffer from life-threatening weight problems. It's so scary for us to think about our little baby having these issues in years to come, and we feel so many emotions around the nature of the syndrome. Also, people with this diagnosis have lowered IQ's and require a great deal of special education and therapies.

We are asking for prayer for strength for Will and myself, and our families. We have quite a journey ahead of us and continue to ask ourselves, "how did this happen to us?". Of course, we must hold onto hope that Asher will be able to live a happy and productive life, and we know without a shadow of a doubt that God has purpose in this. We are also enlisting prayer on what our future will look like, especially in terms of my work. We know it is unlikely that Asher will be able to attend a typical daycare, which means I may stay home with him and put work on hold for awhile. This is a big decision and we need guidance and clarity from God.

The lyrics to a song by Ginny Owens keep going through my head and bringing me peace. They remind me of God's sovereignty and plan for his people. Here it is if you'd like to listen, and the lyrics are below.

If You Want Me To - Ginny Owens

The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to


It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I go through the valley If You want me to