Wednesday, April 15, 2009

We are here at the hospital. We got here early so that we could make sure we were here when they took Shepherd to to the OR. He is an add-on so they could take him any time. I got to hold him yesterday and he even opened his eyes and looked at me. He is so beautiful. One of the good things about him getting his trach today is that we will get to see his face more again. He has had so many tubes and ventilators attached, it will be so wonderful to see his beautiful face. One thing I am grieving about, that may seem small, is that I will not hear my sweet son cry. When a child has a trach, they cannot speak. If he still has one around the age he would begin talking, they can add an attachment and teach them to speak. But no cries. Some of you may think that's a good deal, but I am heartbroken. He has just begun to wimper for the first time since surgery and every time I hear him, my heart hurts to know I won't hear that again.
But enough of what I don't like about today. God knows and wants to hear my cares and burdens, but I can't stay there for long and worship. 
So today, I am grateful that God has provided a way to help my son breath, so that he can eat and grow and thrive and ultimately move forward. I am grateful that we are at the hospital where all three surgeons who do trachs in the entire state reside. I am grateful that God has sustained my son so far. 
I was thinking the other day about how much I want all of this to be over. And I realized that one of the reasons is that I am looking forward to a time when I won't have to trust God so much all the time. Part of me can't wait for the day when I can look at my circumstances and feel a false sense of security again. Honestly, that's what it is to want this all over. Every day, we walk in the PICU and all the odds are stacked against, and all the children are sick and nothing looks very promising. And you hear good and bad news all day long- but you cannot rely on what you see or the odds to feel secure or safe. And that is what's so hard. Part of me really wants to just rely on my sight and not my faith. Boy, it's easier to rely on sight. But it is not the truth. All of our security that relies on sight is just an illusion, anyway. Because our lives and this universe doesn't function by chance or odds or accidents or luck. They function by the loving hand of a sovereign Father. 
Knowing that, I will try to savor the opportunity to trust God. Life is no different now than it ever has been. We are all vulnerable. And we are all safe. We are in the hands of God.  Shepherd just gives us a vivid picture  of this truth every day.

Psalm 119:42
"I trust in your word"

"The strength of our faith is in direct proportion to our level of belief that God will do exactly what He has promised. Faith has nothing to do with feelings, impressions, outward appearances, nor the probability or improbability of an event. If we try to couple these things with faith, we are no longer resting on the Word of God, because faith is not dependent on them. Faith rests on the pure word of God alone. And when we take him at His Word, our hearts are at peace.
God delights in causing us to exercise our faith. He does so to bless us individually, to bless the church at large, and as a witness to believers. Yet we tend to retreat from the exercising of our faith instead of welcoming it. When trials come, our response should be, "My Heavenly Father has placed this cup into my hands so I may later have something pleasant."
Trials are the food of faith. Oh! may we leave ourselves in the hands of our Heavenly Father. It is the joy of His heart to do good to all His children. Yet trials and difficulties are not the only way faith is exercised and thereby increased. Reading the scriptures also acquaints us with God as He has revealed Himself in them. 
Are you able to genuinely say, from your knowledge of God and your relationship with Him, that He is indeed a beautiful being? If not, let me graciously encourage you to ask God to take you to that point, so you will fully appreciate His gentleness and kindness, so you will be able to say just how Good He is, and so you will know what a delight it is to God's heart to do good for His children.
The closer we come to this point in our inner being, the more willing we are to leave ourselves in His hands and the more satisfied we are with all of His dealings with us. Then when trials come, we will say, "I will patiently wait to see the good God will do in my life, with the calm assurance he will do it."
In this way, we will bear a worthy testimony to the world and thereby strengthen the lives of others."
-George Mueller


KR said...

Stephanie, that is as anointed as anything I've ever read. Thank you for being brave and sharing your heart with us. Praying constantly for Shepherd. For you.

Anonymous said...

Praying so very hard for each of you and your individual needs. God's peace, favor, grace and love be with you. I also wanted to thank you for taking the time to include the readings in your post. They are a huge blessing.
Much love to you all-

Anonymous said...


Although I was really bummed to not be able to come out today to see you, I know that it was exactly the way it was supposed to be, so you can soak all that time in with Shepherd before he goes into surgery.
I love you SO much and I am really looking forward to getting to hug you again and spend time with you. I really hope next week.
I love you!!
Carolina :)
-it goes without saying, but of course I am praying for Shepherd's procedure today.

Anonymous said...

heard they moved the procedure! yay! we are still praying for God's healing hang on Shepherd's lung and that His will will be done! love you guys! can't wait to come visit you!


Anonymous said...

that is His healing HAND, not hang. sorry.

Millie said...

I'm sorry that Sheperd is having to have the trach. I know you didn't want that. You are right about many things though, he is in Gods hands and God is in control, and you will be able to see his handsome face. You may b e able to work on some oral stimulation things with him too, like a pacifier or something so he doesn't have an aversion. Try to stay positive, you are doing a wonderful job of that already.
God bless,
Millie and Colin-hlhs

Greene family said...

I am praying so hard for little Shepherd! Thank you for sharing your heart and helping our faith grow as we walk trough this and pray through this with you. I know I don't know you all very well but I feel like I do as I've been praying for little Shepherd and your family. My sweet Noah has been through some pretty tough medical stuff in the last few days and I've been even more moved to pray for all that you've been going through. It's so tough, but God is good.

~Amanda Greene

Anonymous said...

Isaiah 43 1-13

1 But now, this is what the LORD says—
he who created you, O Jacob,
he who formed you, O Israel:
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
2 When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.

3 For I am the LORD, your God,
the Holy One of Israel, your Savior;
I give Egypt for your ransom,
Cush [a] and Seba in your stead.

4 Since you are precious and honored in my sight,
and because I love you,
I will give men in exchange for you,
and people in exchange for your life.

5 Do not be afraid, for I am with you;
I will bring your children from the east
and gather you from the west.

6 I will say to the north, 'Give them up!'
and to the south, 'Do not hold them back.'
Bring my sons from afar
and my daughters from the ends of the earth-

7 everyone who is called by my name,
whom I created for my glory,
whom I formed and made."

8 Lead out those who have eyes but are blind,
who have ears but are deaf.

9 All the nations gather together
and the peoples assemble.
Which of them foretold this
and proclaimed to us the former things?
Let them bring in their witnesses to prove they were right,
so that others may hear and say, "It is true."

10 "You are my witnesses," declares the LORD,
"and my servant whom I have chosen,
so that you may know and believe me
and understand that I am he.
Before me no god was formed,
nor will there be one after me.

11 I, even I, am the LORD,
and apart from me there is no savior.

12 I have revealed and saved and proclaimed—
I, and not some foreign god among you.
You are my witnesses," declares the LORD, "that I am God.

13 Yes, and from ancient days I am he.
No one can deliver out of my hand.

Isaiah 43: 18 and 19a
18 When I act, who can reverse it?"

Forget the former things;
do not dwell on the past.

19 See, I am doing a new thing!

May this scripture bless you today.
Amy Smith

Blue said...

Just wanted to let you know that Heather and I are praying for you guys!

Anonymous said...

Stephanie, I know you don't know me very well, but i've been keeping up with y'all on here. God's Spirit is so evident in you; you have such a beautiful heart and are such a great mom. Thank you for sharing these updates, and I hope it helps you to know how many people are praying for you and your sweet boy.
Rachel Henkel

Terri said...


You are all in my thoughts and prayers. Somehow or another God led me to your blog just as you began to share your journey--what a blessing it has been for me and what a privilege it is to pray for you!

Your sister in Christ,


christine said...

Dixie mango posted about you and asked for prayers. Please know that I will be praying for your little Shepard and your entire family. I wish him a speedy recovery and your family the strength to cope during this very hard time.