Difficult Days

I have put off writing all day, hoping that I’d perk up and have something chipper to say. Alas, I don’t. Its been a tough week.

I have two friends who are living some of the most difficult moments I think a parent can endure. Given how much their experiences have affected me, I can barely imagine how they have survived this week or will get through the weeks to come.

One has a profoundly disabled child who went from the ER to the ICU on Sunday night with sepsis, pneumonia, and possible heart complications. Miraculously, she has stabilized enough to transfer from the Medical University of South Carolina Children’s Hospital (where they were on vacation) to Texas Children’s Hospital by air ambulance tonight. They still have a long way to go but she is fighting hard.

The other was pregnant with a baby boy diagnosed several weeks ago as having downs syndrome and a heart condition. She lost him this past week, at 33 and 1/2 weeks. His memorial service was this afternoon and it was heart breaking. I don’t think I have ever seen such a tiny coffin.

At the same time, I am so grateful that they had the service. I think so many times in these circumstances family and friends don’t know what to do or what to say, and often don’t treat the loss as a death in the traditional sense. I’m so grateful that my friend was so brave to help all of us understand her families loss and her pain. In so doing, she has also helped us to hold her up and be better friends.

Such a flood of emotions this week. From worrying all night Sunday that sweet Caroline would die before the sun came up, to mourning the loss of a baby boy I had yet to meet, but who was already so loved and so anticipated by so many.

So I sign off tonight grateful beyond measure for sweet baby James, his life and his health (and mine and Chris’s too). I love him so much. Being his Mama is the best thing in the world.

5 thoughts on “Difficult Days

  1. Common Loon August 11, 2012 / 8:50 am

    Will continue to pray.

  2. Mom August 11, 2012 / 9:06 am

    You are entitled to not feel very perky. How sad for your friends and their families losing their precious baby boy….. I, too, will continue my prayers for Caroline and her family — what a difficult life that little girl and all of them have had — not all bad times, for sure — but…… Special hugs for all.

    • Elizabeth DeLuca August 11, 2012 / 11:28 pm

      Thank you for your prayers for Caroline, we surely need them, exponentially, She has not been difficult or created difficulties for us or for those around us. She has created joy, love, and a sense of God’s trust in our family. My children are happy, secure, well adjusted, loving and successful, I am sure that Anthony and I, and Caroline’s journey have contributed to that. thank you again for your prayers/

  3. Elizabeth DeLuca August 11, 2012 / 11:22 pm

    This week was one of the worst, if not the worst for us as parents of Caroline. The thing about Caroline is, she is the most perfect person in the world to us. To the casual observer she is a sick child, one who is completely dependent, tons of work, unable to express emotion, a drain on her family. I know because I hear people say it.
    The opposite is true for her family and those that “know” her. To “know” her you have to take time out of your perfect world and spend some time, trying, to get to know her.
    Eileen, you, Chris, and baby James truly know Caroline. You have stayed in our home with her, shared meals with her, shared communion with her.
    She is, and will always be, a precious valued member of our family, one who contributes so much to our daily joys and excitement.. To have come close to losing her Sunday was possibly the scariest moment of my life.
    I am so grateful to you Eileen for appreciating God’s gift, Caroline, as a person. As a creation of God’s own making, not a mistake. A drain, a drag, a burden, she has never and will never be that.
    If, indeed we lose her one day, I will never be whole again.
    For that family, excitedly anticipating God’s gift of a perfect child, with an extra chromosome 23, my heart goes out to them for losing, what would undoubtedly have been a truly amazing blessing. They were chosen, by God, to carry a special child. They were chosen, not subjected to.
    Eileen, you are an amazing friend and I am lucky to have you. If your friends need anything, anything at all that I can do or help with, let me know.

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