Thank you for visiting my blog! If you are visiting because you have experienced a pregnancy or infant loss, let me say that I am so very sorry. I started this blog shortly after our Baby Grady was stillborn on November 12, 2008. Please visit the sidebar below called "Labels" to find the topic in which you are interested, or just read as your heart desires.

Wednesday, December 1, 2010

Voice of Reason and Matthew's Song

The last 48ish hours have been hard. And that's an understatement.

I have yet to find anything positive about porencephaly online. I literally spent yesterday obsessing and pacing the floor. And praying, too.

I had a hard time putting Matthew down, so he paced with me in my arms. I spent lots of time on the phone with the insurance company and doctor's office. Hopefully, we will have an appointment Monday with a neurologist. I'm excited but a little concerned that we can get an appointment so quickly. Most pediatric neurologists are booked at least two months out. I'm just wondering if the one we are seeing is really that great (he was NOT my peds first choice). But you have to be pretty smart to be a neurologist, and I'm just counting it as a blessing and gift from God to have the opportunity to get some answers this soon. If I don't like him, I can always wait longer and get a second opinion from someone else. I love options.

My voice of reason spoke with me last night. Betcha can't guess who that is...

Yep, her name is Suzanne. Not only did I talk to her, but she talked to Dr. L, the neonatologist from the NICU. When she told him about Matthew, he all but blew it off and said it was common in preemies after a bleed, baby's compensate well and it should be no big deal. I know Dr. L isn't God, but I do have lots of faith and trust in his wisdom, knowledge and expertise. He is one of the smartest people I've ever met. I was able to breathe a slight sigh of relief after talking to Suzanne. She told me I was looking in the wrong places. That I should only be looking in medical journals for info, but I don't have the kind of access she does. I tried google scholar, but could only read a few abstracts. The size and location of this cyst/cavity is going to be a huge determining factor in Matthew's prognosis. The neurologist should be able to pull up the image/results digitally at our appointment and give us more info. No offense to radiologists out there, but I don't know the qualifications of the one who read his scan and gave no measurements. That's just not right.

Anyway, after I posted about the results, I went to prepare dinner. The whole time I was in the kitchen, and the rest of Monday evening, I just kept telling myself that God is bigger than this. Telling God that He is bigger than this.

When I went to bed that night, with my mind still wandering, a song jumped into my head. It is the song that gave me the most hope that Matthew would be born alive. The song that would bring me to tears every time we sang it at church. The chorus played over and over in my head. I have referred to it several times as "Matthew's song", but now it really is.

The song is "Our God is Greater" by Chris Tomlin, song number 22 on my playlist below. Here's the chorus:

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...

And I love the bridge too:

And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
What can stand against?

(Lyrics taken from here)

As I paced and prayed, I repeated those words. I do feel a bit more at peace today. But it's hard to completely rest when something might be wrong with your child. And even though the bible tells us not to worry, I'm human just like everyone else. I trust God in His plan for Matthew and our family, and I'm praying for a great outcome from all of this. I know you will pray for us too, and you will never know how grateful I am for that!

I'm calling the doctor back today to see if we can get Matthew started on some physical therapy for his right arm/hand soon. I've been working with him and have seen some improvement. I can only hope that a professional will help even more. I will keep you posted on all of this in the days to come.

Thanks for always "listening" to me!



  1. Hang in there sweet Tonya. Our God is in control...and He is always faithful!

    Love, Linda

  2. Always thinking of you and praying. Emily

  3. Praying for the Lord to flood you with peace in your heart. I want a flooding, not just enough to get you through the day... He says His mercies are new every day... Praying for sweet little Matthew and you all of course... LOve you Tonya!

  4. Check with a wonderful program called "Babies can't Wait" it brings pediatric Physical Therapist to your house so that your children aren't exposed to germs. Trust God. We had Neurologist at Scottish Rite tell us Morgan would NEVER walk due to Benign Congenital Hypotonia and she now plays Fast Pitch Softball here in Jefferson. Our God is able, he is the Great Physician. I'm praying with you and your family that your precious Matthew is healed in Jesus name, Amen.


  5. Continuing to pray for Matthew and your family! :)