Friday, December 30, 2011


"I feel......cold." 

10 points to anyone (except Ben) who can guess what that is from.

I do literally feel cold because it would appear that winter has finally hit. But more than that, today I feel heavy. Rambo is thankfully doing well and that cold we were trying to hold at bay has started to move from him to me. I would rather it be that way but I feel this cough deep down in my chest. You know that kind where you feel it but you can't quite get it? Yup, that's the one. Other than that I feel fine and Rambo seems to be settling back into normal.

Yesterday was trying to say the least. We had to take Rambo to the doctors to get his monthly shot in each leg. No big deal. But the nurse must have mentally gone on vacation because she did a horrible job. I don't say that lightly. On the first shot she didn't have his leg down well enough so the needle came out and she had to put it in again. Actually, I can't say for certain the needle came all the way out. I don't remember. But I do know she had to push it back in. Whether partially or all the way, I'm unsure. Then on the second leg the syringe actually came disconnected from the needle so he had a needle sticking out of his leg for no reason. The medicine spilled everywhere. Result? Rambo only got a partial dose of the medicine. Only a specific amount of this medicine gets sent to the doctors so there was not any left for him to get the full amount. The nurse said "We'll just have to go with that." Not that there was anything else she could really say, but it seemed so casual to me. Here's hoping he doesn't get RSV. 

Then there are the pharmacies who don't do what they say they will do. Me spending 3 days trying to get 1 prescription. Of which 2 of those days I spent waiting 40 minutes in the actual pharmacy because they hadn't yet done what they said they would do. It's the same with one doctors office getting in touch with another one.

It was all too much. I don't know how I'm supposed to be a doctor, nurse, pharmacy, insurance company on top of wife and mom. Why can everyone else get away with not doing there job, or doing it poorly, but I can't? And I think that's the catch. I don't desire to do my job poorly. I want to be good at it. I want to wake up everyday and try to do the best I can with my husband, my children, my responsibilities. Maybe all these people were just having a bad day. It happens. But it all ends up on me. I have to be the one staying on top of everybody and keeping everyone else straight. 

On top of that, yesterday morning was a very reflective day for me. I don't know why exactly. But I was thinking about how Rambo is a year old. Already. 12 months have passed and we are not any closer to getting him off any machines then we were when we brought him home 8 months ago. Next year could literally hold the same exact thing this year did. 

The same. Nothing.

He's growing for sure. More outwards than upwards, but growing non the less. 21 pounds at yesterdays appointment. He's getting there developmentally - still behind - maybe always will be - but he's trying. Health-wise nothing is different.

Feeding tube.
No swallowing.

That's where there has been no growth. None. 

Next year could be the same.

I sigh. Whether in sadness or frustration or realization I don't know. But it feels like a complete thought. And that's about as deep as I want my thoughts to get concerning this.

As we speak my dear sister in law is in the hospital having her baby boy. Yay Lauren!! I'm so happy for you and your family. Truly I am. But it makes my heart hurt. Knowing that her son will one day surpass mine. Knowing that he'll attain things in his first year my son may not even see in his second. I didn't think it would be this hard. (Although, when she found out she was having a boy I did want to curse the sun moon and stars. :) Why couldn't it be a girl???!?!) Not stealing your joy, Lauren. I am happy beyond words for you. But it does bring back memories of things I missed. Things I never got to have with Theodore. Time that slipped away. 

On the flip side, I just went over and held Teddydore because he woke up from his nap and he gave me that sweet sublime wonderful smile. Indeed, I love this boy. And I think that is the thought I will leave with.                 


  1. Barbossa's death...

    A. Nanci

  2. "In the multitude of my thoughts, within me your comforts delight my soul" Ps 94:19

    (has been my mantra for many years and continues to deliver when most needed)

    A. Nanci

  3. love you my dear and most wonderful D.I.L...more friend than anything else ya know. You bring a comfort, an encouragement to my life just when I need it most. I know that God's perfect plan for you is incredibly hard. I'm not sure we'll know "why" this side of heaven as it's said. But I do know that the God of all creation has chosen you to be T.R.T's mother! I am so proud of you, I have to say that your witty , snarky , comments continue to make me laugh and cry! God is using you my love, more than you'll even know! xoxoxo M. <><

  4. BTW...I am SO jealous of your new eggnog cups! There is a strange sort of justice...a order to life in general... that you and Ben got those don't ya think? xoxo M. <><

  5. Amanda I must say, Ever since I saw photos of Eli & Laurens little newborn I have prayed lots of prayers for you and your family. I told Robert it must be very hard a bittersweet for you during this time. I'm glad your sharing in your blog with all of us how hard this past year has been and how hard the next might be. You did end the blog with what keeps you going. Rambo's cute little smile that looks to you with nothing but thanks & love & so much more. Yes, God is indeed using you in more ways then you'll ever know. God is in full control when no one else is. Aren't you glad you draw your strength from Him? God Bless xoxoxoxoox Linda

  6. You know birth is a beautiful thing and children are a blessing. I am so happy for Lauren and Eli but there son, will probably never have his own personal parking spot! He is loved by strangers and so many others but even more so, He is fearfully and wonderfully made! Love you!