"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Monday, March 14, 2011

March 14, 2011

I think about the laser ablation and the boys' births everyday, but the details really came flooding back over the past week and a half. Benjamin turned 1 last Friday and as much as I wanted to celebrate, my heart just wasn't in it. I baked a cake, we sang happy birthday and took a few pictures, but that was about it. I promised my beautiful little boy that next year will be different. I do want to thank everyone who sent me notes wishing him a happy birthday, cards and gifts. Even though I had a hard time acknowledging the day, I'm grateful for those that did.

Today was especially hard because it's the anniversary of Stephen's death. If I had known what was to come, I would have have spent every minute of those 3 days we had him by his isolette. Even though Benjamin is bigger now, sometimes when I look at him I have flashbacks of Stephen's perfect little face. It comforts me to know that this is exactly what Stephen would have looked like if he was still with us. I don't have wonder.

To add to this already depressing post, I'm fairly certain Benjamin is having seizures. He's displaying all the sigs of petit mal seizures and he has them multiple times a day. I guess since an MRI isn't in the near future, he'll most likely have to have an EEG.

We finally have a GI doctor and so far I really like him. Benjamin's now considered "failure to thrive" because he hasn't gained any weight in over 3 months and this doctor is going to help us chunk him back up! Over the past few days we've been increasing his tube feedings and he's gagging alot, spitting more and overall uncomfortable. He'll be starting back on the Erythromycin tomorrow. Add another med to the mix!

I keep telling myself it could be worse. We've hit a few bumps in the road, but things will get better!

2 comments:

  1. Sometimes life can be overwhelming, with medical stuff complicating it. Make sure you take a step back when you feel this way. Spend time with good friends who can pep you up. I know that real life faces us after our break, but it is a necessity, not a treat, to do this for ourselves. Your friends will enjoy your presence and will not be burdened (which is what I would sometimes feel). Being honest with yourself about how you feel is good for you too. We are human and life can be exhausting.

    It is hard for me to believe that it has been a whole year. Look back on it with eyes of wonderment at everything that has been accomplished.

    Stephen is in God's hands, yet he is in all of your hearts. He lives through Benjamin, since you will always think of both boys as you look at him. Cherish what is, versus what might have been.

    Thank you again for your honesty,
    Sandy

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  2. I was so honored to have met Stephen and although I didn't remember the exact date he passed away, I will never forget that moment. You are an amazingly strong family and have come through some of the most difficult times any parents could imagine.
    Your blog is so inspiring because it is so real and isn't afraid to let things be said.
    thank you for letting us be part of your lives!
    big hugs to all,
    Lori

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