Monday, November 30, 2009

broken down.

Tonight I am weary, tonight I am worn.
Tonight the tears are a stinging reminder I am not strong enough.

We had our follow up today and it really wasn't that bad. His ANC was 300, so still in the "severely neutropenic" category but I expect no less. I have come to terms with his neutropenia. I can handle the fact he is immune compromised and I need to be careful. I have a new thermometer that scans his forehead and I can check it multiple times a day. I can wash my hands and prevent people from coming over. I can tangibly manage his neutropenia.
However, his weight is a battle that is simply wearing me down. He lost three ounces since our last weigh in.
As far as the growth chart goes, for height, he has now fallen completely off the chart. He is so small that 100% of babies his age are longer than he is. Weight is dropping quickly and is at 25%. He cant afford to lose even an ounce. I can not tell you how hard it is to watch him waste away in front of my eyes. I am doing everything I can to try to get him to gain weight. We work so hard. I simply can not make this better. I am his mother and I just feel so inadequate. I have been so strong and fought the good fight everyday. I watched as he lay in his hospital bed and as he went through test after test. I put on my brave face and was there with a smiling face for him in recovery. The truth is though, that I am not strong enough to watch my child go through this.
The two years it took us to get pregnant with him, the five miscarriages we went through during that time, the high risk and complicated pregnancy, the NICU stay, the hospitalizations, the unknown. We have been through so much, and tonight, I am tired. My soul is so weary. I can feel the Lord calling. Whispering to give it to Him. I just can't. Not tonight. I don't want to put EJ on the alter. I want him healed and healthy in my arms. I want him and I don't want to let go. And tonight the overwhelming fear of ever losing him just feels so large. I cant tuck it away and push it down. Oh lord, I am so weary. I hurt so badly for my son, my child.
So friends, will you please pray for me. Pray I can find renewed strength and peace. That I can wake up ready to continue our fight. Pray I can hand this over to the Lord.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11


prayers4z said...

Oh sweetie, do not ever doubt what a wonderful mom you are. You have the strength in you and I pray that you find it. It is so hard. (((HUGS)))

Danielle said...

I read about you on my friend's blog {Jess -- Logan's mom}. If you get a chance, can you please email me at

I will say a prayer for you and for little EJ. What a precious little guy. Your words are so beautifully written. I really needed to read this blog tonight, so thank you for sharing your story.

I hope I hear from you soon :)


Wendi@Every Day Miracles said...

Oh sweet friend - how I feel for you! I have been there and I know the feeling of just wanting to be DONE - or at least get a little reprieve. We were in the hospital alot with Caleb his first two years and he was labeled "failure to thrive". He was not on the charts till he was about 4 years old. I don't know how your journey will play out - I wish I could tell you every thing will turn out wonderfully, Oh I really really wish I could... but I can't. I can tell you that you are an amazing mommy, that you have support, that God is an amazing comforter, and that you will be okay.
I am praying for you lots.

Randi said...

Honey:( I can't even begin to imagine how hard this is. My heart is so sad for you and all that you've been through. You are always in my thoughts and prayers, as is sweet beautiful E.J. He has such an awesome purpose and we don't even know it, nor can fathom it:)

MANY MANY MANY Cyber hugs to you my friend!!

Adventures In Babywearing said...

Praying. And lifting you up. Where you feel broken, let Him put you back together. You don't have to lift a finger.


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