Monday, December 28, 2009

honesty.

Okay I need to get this off my chest.
First let me start by saying that I am so eternally grateful that EJ is here on earth with me. That he is here and that we are so far being able to manage his health issues. I am so thankful because I know there are so many sweet little ones in heaven, so many that received their healing in heaven instead of on earth. So many cancer patients and transplant patients. Sweet children who literally grow up never leaving the hospital. I pray for all of them and I am so thankful we are doing as well as we are.
With that said...

I am so sad tonight and I praying so hard to be delivered from this. I do not want to be ungrateful, but how could I claim to be honest if I wasn't. I am only human and I have weakness. Watching my child go through what he went through today, again and again and again...It wears me down.....

Every time Ej has a fever over 100.5 we have to take him in. Every time. Infections can very quickly become fatal for him since he lacks a sufficient immune system. He has to receive IV antibiotics every time. If his levels are below 500, we will be admitted every time. Since he is prone to infection, this happens...you guessed it...all of the time.

Since October the amount of time we have been to the hospital is staggering.

Poor EJ has no clue why everyone at the doctors hurts him. His little face breaks my heart when they try "one last time" to get an iv. He looks at me and cries "mama" but I can not make it better.

It is so horrible to feel this way and it makes me so mad that I feel it, but I do. I am heart broken that my sweet boy has to go through all this torture and there is no end in sight. The new normal is grinding me down, breaking me.

Adam told me since I have come home from the hospital this last time I am different. And I am. The little mundane things like cleaning and laundry are so hard for me. I am finding it hard to assimilate back into regular life. I am changed. And, honestly, not for the better. I am always waiting for the shoe to drop and for a fever to spike. For him to become dehydrated again or to refuse to eat or for anything to go wrong. I am constantly thinking about losing him. About how I would handle it and what I would do. It is like my mind is trying to prepare for the worse case scenario. There is no reason to do this but I can't turn it off...

He has lost more weight again. I was expecting this since he is sick but it is still so hard to see those numbers on the scale.
All of this is so hard.

I can do nothing. I am completely helpless is all of this. All I can do is take a back seat and watch and hope and pray. I hate feeling powerless. Today while waiting for his results, Austin and I prayed together for his level to be above 500. I keep taking it to the Lords feet and He is always so faithful. I feel as if I am one big ball of mess and that I don't deserve such a faithful God. On the other end I feel as if I demand to much from Him. How do you walk a line of gratitude and demand?Or am I the only one who struggles with this?

Today I learned that the pharmacy had given us the wrong iron supplement. The one they gave us had 5% alcohol in it and was the adult version. Because I have become OCD I read this and refused to give it to him. So our doctor called in the correct formula and all is well. But I don't want to have to worry about all his meds. About every little detail. It is driving me crazy. At night my thoughts seriously do not turn off.

I feel like I could write a medical journal at this point.

I am so tired. Literally. After a week of no sleep I have little to no patience left and little to no strength. My reserves are shot.

So as I sit here with gratitude for a God who is loving gentle and kind, I am also worn, tired, and full of sadness. I praise the God who says both yes and no. Just sometimes, sometimes, I wish yes came a little easier.

Please pray for my strength. I feel like such a prayer hog, seriously, but you all have no idea how grateful I am. How much each and everyone of you mean to me...

11 comments:

Elizabeth said...

Oh sweetie I am so sorry you are having to go through this. Do not feel guilty for feeling upset that your child is sick. No one is going to blame you for feeling that way. I can not imagine how hard it is and I am praying for you both. Know we are here for you.

Shanna said...

You wouldn't be human if you didn't feel this way! I am praying for ya'll!

The First-Year Wife said...

I'm so sorry you (and your family) have to go through this ordeal. I can't even imagine how tough it must be. I've been following your blog for awhile now and I think it sounds you're handling this better than you give yourself credit for. It's only natural to feel the way you do sometimes. Even if you're feeling down, I'm sure your son feels better just having you there with him.
I'll be praying for all of you.

Jess said...

Oh goodness...my heart is heavy for you. I'm so sorry that EJ is in this situation right now, and for how hard that is for you. You have been so strong, and though you're down now, God *will* carry you again.

I don't know if you're familiar with Hillsong's "The Desert Song", but I love the lines at the end... "I know that I'm filled to be emptied again / The seed I've received I will sow". Maybe there's some comfort for you there, too.

I will continue to pray for you and EJ! Keep leaning in! xoxo

Mrs Bee said...

Oh honey, I am so sorry you have to go through this.

As always,
I am praying for you and your beautiful family.

All my love.

Amy said...

Hello. I found your site a while ago from Kelly's Korner. After reading this most recent post I wanted you to know that your feelings are always valid. While it is true that there is always someone out there going through something worse than ours, it does not make what we are going through any less important. Please know that your feelings are so very raw right now and never feel that getting it off your chest is something bad.

My mom, who is 55, was just diagnosed with cancer of the esophagus. Her prognosis is poor but twelve years ago she beat leukemia with a poorer prognosis. With Him all things are possible.

I pray that your son is better this coming year and that you feel the strength that God gives.

Hugs to you.

Laurie said...

I've been praying for your little guy for weeks now. He's quite a fighter, but I wish the prayers would be answered soon! I would so give you a hug and a shoulder to cry on right now. Still praying!

Randi said...

As I read this my heart broke with you. I am SO sorry you are dealing with this and I can't imagine what it feels like. I admire your honesty with this post. You are human and there isn't a mother out here who wouldn't feel this way.

My prayers for precious EJ and you continue. Hugs honey!!!

Gail said...

The Lord is right there for you although you may not be able to see, feel or hear Him and He is in control. All things are possible and I will pray for a miracle and will ask all know to do the same. The Lord is able and I have seen Him at work in so many situations. Please know that your strength through Him will carry you. May God bless EJ and continue to protect and keep Him and heal Him at this time. In Jesus name Amen.

The Harrisons said...

Elle,
It's ok to feel this way, I promise. And I also know that God will fill that lost, exhausted part of your heart. It's not fair. It never will be. Just remember to be there fully for EJ when you can - that's all he needs and all that matters right now. "Ride the waves" - good days are around the corner. Email me if you need to talk.
We're praying for you always.

Wendi@Every Day Miracles said...

I am just getting caught up on some blog reading - I've been pretty out of the blogging loop since the holidays.
I can relate to so much of this. And I am so sorry that you have to go through it all. :( Know that you are not alone in this and you are being prayed for!

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