Monday, April 11, 2011

Not So Sweet Dreams...

Nathan's first night with his NG tube was/is a success, if you can even call anything related to being fed through a tube that. He slept "like a baby", just like he always has.

I can't say the same for myself... I didn't even lay down until close to midnight and I am now wide awake and it's barely 4:30am. I kept waking up every 45 minutes or so almost as if I was trying to wake up from a really bad dream. However, each time I awoke to realize that this is not a bad dream... it's our real-life playing over in my head. I'm not going to lie, this is most awful, terrible, horrible, painful, experience I have ever been through. I wouldn't be human if I weren't having those feelings, or even a mother for that matter. It's amazing how quickly life can change from a child who is the picture of health to a child who is sick, yet doesn't look sick, to a child who still doesn't quite look sick, but has this NG tube taped to his face, which I'm pretty sure makes him look sick now, and will create stares, comments, and ridiculous questions from people who lack understanding of what it feels like to have a child who has a disease that there is currently no cure for. I pray that Mark and I will find patience in these circumstances and try really hard to remember, there is no way they could understand if they haven't walked where we are walking now, and I pray no parent or child has to go through anything like we are going through ever!

I apologize for the no so positive post this morning, yet, I've been very positive through all of this so far, minus a couple of bad days here recently, and I told myself when I began this blog I wouldn't write about those times... then I thought about it. I wanted to create this blog as a source of information to keep family and friends updated on how Nathan is doing. But, I also wanted to write this blog so that another family going through this same struggle could have insight on our experience in hopes that it will be a source of encouragement to them to know that they are not alone and to be matter-of-fact so that they can know what to expect along the way.

I have met some wonderful mothers of children with eosinophilic disorders by this blog and on Facebook as well. They have been a huge part in me keeping my chin up on most days since receiving this diagnosis for Nathan. They completely understand what it's like to be told to take food away from their child, knowing that their child is hungry and would probably eat anything you put in front of them. But you can't cheat and sneak something to them because you don't know what foods are hurting them and you don't want to make your child hurt because you fed them something. They know what it's like to battle with getting their child to drink enough special formula every day to make sure their child will continue to thrive. Some of them also know what it's like to have an NG tube placed in their child and the awful feeling that comes when you watch your child being fed that way. Many understand even worse than Mark and I do right now too, like having a surgical procedure performed on their child to place a more permanent feeding tube called a G-tube or a J-tube. They even understand what it's like to finally find a few safe foods for their child to eat just to find out that their latest endoscopy and biopsies showed damage to the esophagus and they must now take away all foods and start from square one all over again.

The best advice I've gotten is to take it one day at a time. When I start thinking about all of the unknowns in Nathan's future it's upsetting. Like, will he ever be able to enjoy another homemade birthday cake created my his mommy? Or, is our little family ever going to be able to sit down to dinner together and have a meal? I can't waste my time and energy thinking about things like that right now. But if I just think about the things I need to do to get us through one more day it's not so overwhelming anymore. I can't promise I wont have anymore days where I want to kick and scream out of frustration, but I will do my best to take it one day at a time, so I can have fun and enjoy life with our precious baby boy each and every day!

One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.

One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.

One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.

Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."

Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.

One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.

Annie Johnson Flint

Deut. 33:25 ...and as thy days, so shall thy strength be.

2Cor. 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.


  1. What a crazy day/ night you have had. I have been thinking about both you and Nathan ever since i read your post last night. I hope that you have an opportunity to lay down today. I can't imagine what a terrible night you must have had. Just think 3 weeks... 3 weeks. At least then you will know what you are dealing with and that will put you in a better place. I will pray that his safe food list is big enough for you to come up with lots of tasty options. I will continue to lift you and Nathan up in prayer.

  2. Thank you so much... things got better for me this morning when Nathan woke up. He was a bit afraid at first, which I hated for him. I guess just being somewhere strange. But he was smiling like he always does rather quickly. Thanks for all the prayers... it works and it's giving Mark and I the strength to make it through the day right now!

  3. You deserve a good vent now and again. It's completely understandable and normal! You will find your new normal, some cool bandaids or stickers to put over his NG tube and a grace to handle those people who just don't know how to approach him but are too curious to walk away. He will get better. And you will find a way to include him in meal times and food celebrations. Just because it's different doesn't mean it's not going to be great. still entirely deserve to feel sad about what you and Nathan are giving up, even if it is temporary. More prayers and angels coming your way.

  4. Thank you! I've said it before and I'll say it again. It is more comforting than anything hearing words of encouragement from people who have been where we are now. Thanks for offering a new perspective on things and assuring me it will be a good thing. I believe that you are right and I am excited to have such awesome times to come with our family!