"What would have become of me had I not believed that I would see the Lord's goodness in the land of the LIVING. Wait, hope for and EXPECT the Lord. Be strong and of good courage and may your heart (Ned) be sturdy and enduring.....Yes, Wait For and Hope For and Expect the Lord."

Psalm 27:13-14 (Amp)

Wednesday, April 9, 2008

More of the Same

As I entered the NICU today my nurse advised me that they planned to perform and MRI on Ned's brain. They have some concerns about his brain development and/or damage due to the fact that he has some issues with controlling his left eye. I fretted over it all day even after the doctors delayed the MRI until tomorrow. I have always noticed that his eye wandered a bit. Actually, it is much more controlled now than it was initially. I felt encouraged at the progress and just assumed it would correct itself over time or that he may need to see an opthomologist, not a neurologist! Dr. Adamson also indirectly let me know that he would prefer to put off the g-tube surgery for a couple weeks so we'll be here at least another month.

After all the news of the day, I began feeling extremely overwhelmed so I went for a little walk. When I walk or run alone, I pray. Tonight, I honestly spent the entire trip praying for myself and my family (I apologize to all others who are on my prayer list). I feel like I have compromised every responsiblity in my life. While trying to juggle them all, I have failed on all accounts. I have, obviously, no control over Ned's physical or mental development; I receive 30 second snippets of Jack's life over the phone at night which essentially to me means that I have missed the past 3 months of his life; and in an effort to spare Travis the burden of having to deal with me when I'm an emotional mess, I continually bite his head off when he attempts to console me.

As I walk I try to lay these things at the foot of the cross, but I am completely overcome with fears that may be completely illogical, but I can't seem to erase them from my mind. Once Ned has his nissen procedure (where they tighten the sphincter leading into the esophogus), he will never be capable of vomiting. While I had always hoped that my children wouldn't be partaking in binge drinking, now it could be a fatal decision for Ned. So I'm praying that I will be able to instill in my children the value of holding their bodies as sacred temples, hoping that Jack will lead Ned by example as his big brother.....really trying to be positive- then the irrational fears completely take over. Maybe Ned won't ever come to a university like this and have the opportunity to avoid making really poor decisions. I am suddenly gripped with thoughts that I may possibly always have to watch Ned struggle to perform the most simple of tasks. Maybe he won't be able to learn his ABC's which Jack mastered somewhere around age 2. Maybe I'll never be able to know him past a vague look in his eyes. I fear that the real life of my son will be trapped somewhere within where it can't get out and I can't reach deep enough to know it. But my biggest fear is that this encroaching fear that continually and quite commonly pops into my life in the form of an unknown medical anomoly will become a common fixture in our family. That it will be as normal and recurring as dental visits, that it will loom over us in a way that it will always occupy the empty chair at the dinner table.

That's when the Lord spoke to me, "Not if you dine with me at my table" I stop my walk and tensions are eased. God tells me that if I stay in close communion with Him, my fears cannot conquer me. It is amazing how one word from the Lord can calm you. I am still afraid, but now I am resolute to pray through it. Whereas, before my walk, I was contemplating the need for medication. Just as Jesus calmed the fears of the disciples when he stepped into the boat with them (John 6:18-21) and the seas and their fears subsided, as did mine when I realized that He alone could calm the storms raging in me.

Tonight I am praying that I will allow God to take my fears from me so that I can find some peace regarding tomorrow's MRI. I am also praying that the MRI will be normal. In my logical mind, I feel pretty good about it, but in the world of the "what if's", I become completely overwhelmed. I guess just knowing that there is the possibility is enough to cause me some panic. I am praying the following verses (Psalm 27:1-5)

(1) THE LORD is my Light and my Salvation--whom shall I fear or dread? The Lord is the Refuge and Stronghold of my life--of whom shall I be afraid? (2) When the wicked, even my enemies and my foes, came upon me to eat up my flesh, they stumbled and fell. (3) Though a host encamp against me, my heart shall not fear; though war arise against me, [even then] in this will I be confident. (4) One thing have I asked of the Lord, that will I seek, inquire for, and [insistently] require: that I may dwell in the house of the Lord [in His presence] all the days of my life, to behold and gaze upon the beauty [the sweet attractiveness and the delightful loveliness] of the Lord and to meditate, consider, and inquire in His temple. (5) For in the day of trouble He will hide me in His shelter; in the secret place of His tent will He hide me; He will set me high upon a rock.

Thank you for your continued prayers and concern. And thank you for allowing me to share my fears with you- they somehow loose their power when I share them and publically hand them over to the Lord....again, you'll never know how much you have all meant to me during this time...I just can't express it enough.

Lots and lots of love and blessings!
Betsy, Travis, Jack and Ned


Anonymous said...

Betsy, What a wonderfully honest post....and what beautiful Scripture on which to dwell. I find myself not knowing what to say.....it's a place where I find myself quite a bit these days. With the Lord, I am simply honest about this "not knowing." Sometimes, I really don't know what to ask for in my life or the lives of my children....what I truly want is what God wants and there are days that I'm not so sure what that is (or that I can handle it?). So I just ask the Holy Spirit to plead on my behalf....to invite the Lord Almightly to move His perfect will into place.
So I ask the Lord tonite to work His wonders in your life and in the life of your family...so He may receive all the glory, praise and majesty for the great miracle we call "Ned."
Sending love your way, Sherry

belle said...

I am intrigued by your daily blogs and am thankful you have shared your thoughts online, though you don't even take time for yourself to even rest. That alone shows your dedication to the Lord as you witness and continue to touch the lives of so many during these trying times. God will continue to be with you all through the MRI tomorrow. As you have trusted in Him thus far, I can lie in peace tonight knowing you will be trusting in Him tomorrow as well. Just another obstacle for your little 'warrior' to overcome. Will be thinking of you tomorrow as always...

Cadenne Hope's Grandma said...

Betsy, I hear your heart. I know that this has got to be difficult. I remember when they were doing genetic testing (at age 2 months or so) because the doctor decided that something just wasn't quite right. It all came back normal, of course, but it was hard.

I love what God said to you about dining at his table. I love the verse in Ps 23 where one translation says "In the presence of my enemies, he welcomes me as his special guest."

So, dear friend, in the presence of your enemies [negative thoughts, fears, worry about the future, worry about your ability to deal with it, etc.] Jesus says come and sit down and let's eat and talk. He says, the enemy is not welcome in here--in my house--so he'll stay outside and you and I can have a good time. You'll know that you are safe and all is well with your life because I am bigger than the enemy outside.

You are in my prayers. Please post soon about the MRI results when you know them. You have a prayer warrior or two in California!

Anonymous said...

Hi Mama-I am a fellow CDH mama and have been following Ned's progress since he was born. I just wanted to let you know that *I* had the Nissen procedure 8 years ago. After a few years of having panic attacks on airplanes when I was nauseous because I didn't know what I would do if I couldn't throw up, I drank too much one night (pre-children!!). Guess what...I threw up! I threw up all the way through my labor with my CDH babe, too. The docs have said that it is no indicator that my repair is failing or loosened.
Hopefully Ned will make the choice not to binge drink, but if some other illness should befall him and he needs to puke, he should be ok.
I just wanted to give you some reassurance!!


Mama to Makena LCDH 9/30/06

Anonymous said...

I was listening to the new Point of Grace cd a couple of months ago, and one of the songs, "Fearless Heart," made me think of you, after reading your post today, I felt I should quote that song to you.
"For even the most trusting soul, this world can be a scary place. So much that we can't control in every moment that we face. When a thousand "what ifs" whisper in our ears, we remember Whose we are and watch them disappear
I wanna live with a fearless heart, courage that's coming from trusting God. It's constantly guiding me though the road may seem dark. I wanna live, wanna live with a fearless heart.
There are worries chasing everyone that's evident in times like these. But I have found the confidence that comes from times I spend on my knees. There's a truth I'm holding onto as these days unfold - greater is He that is in me than he that's in the world.
He's my strength, He's my shelter. He is with me all the way. He's my light, my salvation. Of whom shall I be afraid? Of whom shall I be afraid.

We're thinking about you and remembering you in our prayers.
Ron, Michelle, and Clara