Heavy Heart

Sometimes this world of special needs just…sucks.

If you read my post on Saturday about Amelia, you know what I’m talking about. My stomach seriously hurt all day Saturday thinking about it. A doctor deciding that a child’s life wasn’t worthy simply because her brain doesn’t work like everyone else’s? A hospital administrator saying that a mother was too involved? What is this world coming to?

My friend Hannah and I were chatting on Friday and she was upset because a little girl in their therapy group had passed away. To quote Hannah, “I didn’t sign up for this shit.” I totally agreed. It’s heartbreaking.

On Sunday, my dear friend Jenni had to say goodbye to her sweet little almost 5-year-old daughter Celia. Celia had been battling Batten’s Disease for almost 4 years. Her parents knew it was fatal and simply had to watch and wait for her to die. Devastating.

While it’s true that these things do…absolutely suck…I have learned so much from being in this life of special needs. Jenni and I had a conversation just last week about my “I Will, I Won’t” post. I was worried that I had offended her because she wrote that she didn’t have any “I wills”. My heart broke for her. But she assured me that she knows I treasure each and every one of my wills…and try not to dwell on the don’ts. She has taught me so much through her blog and our friendship. She finds the joy in life and tries to learn from her experience with Batten’s instead of letting it devastate her.

I guess what I’m asking is will you pray for them. I can’t imagine losing a child. Even if it was expected. I can’t imagine the devastation they are going through right now. Will you keep them in your thoughts? Thank you.

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12 responses to “Heavy Heart

  1. they have been in my thoughts continually the last day and a half. so heart breaking!

  2. Heartbreaking. They’ll be foremost in my mind today. xo

  3. I read about Celia’s death yesterday and it took my breath away. Like you I can’t imagine what Jenni and her husband are feeling. I can’t. They’ve been in my prayers, my thoughts as I hugged my girls last night and this morning.

  4. A parent should not outlive their child. I cannot fathom losing either of my children, I don’t know if I could survive it.

  5. This fall my husband and I had to watch our dear, dear friends suffer through the loss of their only child. It was completely unexpected. You could see the hurt, loss, and grief around them – it was tangible. It is a loss that no one should ever have to feel. I have read about Ceila off and on for the past couple of years (found through your blog) and I will definitely keep them in my prayers. Like I said – no one should have to hurt that way.

  6. It is all so heart breaking. How does mortality keep slipping away from us in this day an age? I feel like because of all the modern day medicine death should be a thing of the past. My heart goes out to all these families who have to carry the heavy burden of grief. It truly breaks my heart for all of them. I will keep each one of them in my prayers!

  7. Praying…

  8. thinking, praying, anguishing over each of these families. i cannot imagine.

  9. praying….

  10. What a difficult reality, I cannot even imagine the pain they are feeling. Sending prayers and a huge amount of love there way.

  11. Will be definitely thinking about them. Sending strength their way.

  12. I lost three babies that I grew to love only over the period of a few months. It was devastating. I can’t begin to imagine what it’s like to lose a child that you have grown to know and love over years. They are certainly in my thoughts and prayers. I continue to pray also that children with medical needs are treated equally, not left to die because their needs become blanketed in the word disability.

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