Tuesday, June 17, 2008

He's My Son

In case you may not have figured out, I love music. Somehow it just captures my heart and speaks to my soul. Mark Schultz is an artist I am particularly fond of because his lyrics express things within me that my words never could. Here's the first verse and the chorus of one of his older songs called "He's My Son"...

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself

His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

I always was touched by the pain that this child's parents were experiencing... now I can relate.

Today we had our marathon day at Children's National Medical Center. I wish that I had some positive news to report. In some ways I do. The cystic hygroma is gone, and the cardiologist said that she thinks the heart looks normal. It was still difficult for them to see all that they needed to.

However, the overall report we received today was devastating. The omphalocele is much larger than they had thought. It not only includes the intestines and liver, but also the stomach and part of the bladder. In addition, a new problem arose. Our little boy's spine has an extremely sharp curvature (about 90 degrees) forward, about midway down his back, though higher up then where your back typically bends. It is also bent sideways somewhat. There is also an issue with the spinal cord, something about it being teathered. Consequently, his lungs are extremely small and not developing normally. They are suspecting something called hypoplasia of the lungs.

One of the difficulties with repairing an omphalocele with a normal spine and normal lungs can be breathing difficulties for the baby in the short term. However, with the underdeveloped lungs, the spine the way that it is, and the extremely small abdominal cavity, things do not look good. Although the omphalocele is fixable, the underdeveloped lungs and spine are not.

When we asked the doctors point blank, they said that there's a very strong likelihood that our little boy will die shortly after birth because his lungs would be too underdeveloped to allow him to breathe on his own.

Needless to say, Spencer and I are completely devastated and crushed. Although we knew this could be what we heard today, it wasn't what we were expecting. We really were expecting God to show up in a big way. Maybe He has and I have yet to recognize it.

We could really use your prayers for peace and for wisdom in some pretty significant decisions we're going to need to make with regard to medical intervention. I would also really appreciate your prayers for the boldness to love our baby well while he's still here with us... that I would enjoy feeling him kick and move, even though I know my time with him will most likely be extremely short.

I'll end with some more song lyrics. This is a song Todd Smith (from Selah) and his wife Angie wrote for their little girl, Audrey, who passed away shortly after birth. I changed the word "her" to "him".

"I Will Carry You"

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years

I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says...

I've shown him photographs of time beginning
Walked him through the parted seas
Angel lullabies, no more teary eyes
Who could love him like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who's chosen me
To carry you

Thanks for your continued prayers and encouragement. We definitely need them :)

22 comments:

Erika Mott said...

I wish there was something I could say to help with the news, but will say instead through prayer.

julie said...

I am devistated for you. I know there is nothing I can say to you. I will keep you in my prayers. (((hugs)))

Kristin Ross said...

We will be praying for you, Spencer, and Baby! I also hope that you feel the hope and love of God (even an ounce!) that you so openly shared with me and J last week!

Jen said...

Oh, sweetheart, I am so sorry, my heart just broke for you. Nevertheless, we serve a mighty, powerful God. I will pray for you all. (have the doctors suggested steroid shots? When my son was threatening premature birth, they wanted to give him steroid shots in utero to hurry up the lung development)

Lauren said...

My heart is sad, but not broken. I am still holding out for many miracles for this little man. AND HIS HYGROMA IS GONE... now this other stuff has to go! I know that you may not have the strength to maintain deep faith each day, some days will be better than others, but... that is why you have friends (me included) who will keep up the faith and keep praying for miracles on your son's behalf. He is alive, he is kicking, he is loving his Mama and I know that there is more in store for him HERE! I love you.

Alison said...

Oh Stacy, I am so sorry you are going through this devastating time. I'm glad you seem to be watching Angie Smith's journey through the loss of her little one. Even in my miscarriage, her faith and courage to do the right thing really helped inspire me.

We will be praying that God will grant a miracle on your precious son's behalf. ((HUGS))

amrisser said...

Please know we are continuing to pray for more miracles for you and your little man! We will pray for peace, faith, and God's love to overwhelm you. Stay strong, and don't hesitate if you need a thing...Lancaster is still praying :)

Monica said...

Oh Stacy.....

I have no words. I will continue to lift you up to our Father.

Hugs.

Kristin (kekis) said...

As I read your post, it seems so calm but your pain and sadness must behind it somewhere. Enjoy this time with your baby and know that God has plans for all of you. Maintain hope and vigilant prayer as we all will.

Jaime said...

I am so sorry that yesterday didn't turn out as well as you had hoped. You, Spencer, and your baby boy are in my prayers. Stay strong!

Aunt Robin said...

I wish I could say or do something that would help. I will continue to pray for the three of you that somehow the little fellow's lungs will grow and develop and that his spine will slowly straighten. I will also pray that you and Spencer fine peace and serenity with your little boy.

Sheila said...

Stacy:

I was so hoping for better news for you too, a true miracle but one could still be yet to come. I will continue to keep you, Spencer and your son in my prayers.

Sheila

Anonymous said...

My prayers for continued strength are with you. As you well know, God has a plan for everything.

Beth said...

I am new to your blog but my heart aches for you. I will keep you and your family in my prayers.
"May the God of Hope fill you with all joy and peace as you trust in Him so that you may overflow with hope." Romans 15:13

Lauren said...

Friend - I don't have your email address so I will just ask on here (AND PLEASE NO ONE ABUSE THE FACT THAT MY EMAIL IS ON HERE) but, I wondered if you wouldn't mind sending me your home address. There is something I want to give you.

LaurenUhrich@comcast.net

Love.

Kirsten said...

I'm so sorry about the news. There are no words. You are in my prayers.

jamie shipley said...

lifting all of this up with you to HIM.

Stephanie said...

I am so sorry. There are no words except I am sorry, God is faithful and Jesus is going to make all things new.
I am just so sorry and praying for you.
May you cling to Christ every minute of every day-
Stephanie in Chattanooga

Angie Smith said...

i am so sorry for this season you are in. i want to talk more with you and get to connect. if there is anything i can do, please don't hesitate to ask. im out of town tomorrow, back fri. if you need anything.

God bless,
Angie

alihutch said...

Keeping you guys in my prayers. Your are both, no...all three of you are so brave. You are an inspiration to me.
(((Hugs))) from "yellowcar" from the nest.

Laura said...

Still praying....praying you will feel Him holding you.

Anonymous said...

I saw a link to your blog on thenest.com and I just wanted to tell you that you, your husband and your baby are in my thoughts. I've never been where you are and I am not a parent but I wanted you to know that your story and your courage touched me and I truly wish you all the best during this difficult time. May God bless you and keep you and eventually give you peace.