You are always so DEEP and poetic…I wish you’d write a book.

I agree with you…right in the middle. It’s a tough life…that we were picked to spearhead.

The docs found out all of Isaac’s problems at 20 weeks…and every week they asked me if I still wanted to have this baby. That just broke my heart….every week. I am SO glad that we have our little man…even though we have sacrificed so much…we have learned far more. The empathy alone that we (including our two older boys)have learned…is unbelievable.

You are a wonderful mom…the kids are so very lucky to have you.

And…I’m happy to have you as a friend.
sending you lots of love this new year!
kathy

An important person in my life suggested that I abort Elijah when I found out he had a heart defect at my 20-week ultrasound. I was shocked at the suggestion, as this option hadn’t even occurred to me. Eliminate a baby’s life because he has a health problem?

This is a tough and touchy debate…but I personally feel that Elijah’s struggles, which have also become our struggles, are part of what God intended for our lives. I don’t know why, and I question it often, but I hold onto that thought tightly. I believe that if I had “eliminated” Elijah before he had a chance at life, those struggles would have surfaced for me elsewhere. God had/has specific challenges that he wishes for all of us to work through, and we can’t just push those aside.

I also love what Nicolle wrote about her husband. I feel the same way about Elijah…no matter how long or short his little life may be, I know that he will affect the world and the people around him in such an important, positive way. Knowing that takes away a lot of my pain.

I’m so sorry for your sadness surrounding Ramona’s latest diagnosis. I can feel your pain through your writing. Enjoy that little girl of yours and believe the best with all your heart.

God bless you guys..oxoxo
Megan

I think I know a little of what you speak…my husband’s extra chromosome has brought our family considerable grief and pain. However, this extra chromosome has made him who he is, a beautiful man who is unconditionally accepting of others’ foibles, weaknesses and strengths. I hope my kids will get this trait through genetics or their daily exposure to his attitudes and behavior. Some days I curse that chromosome and others I am grateful for it.

I wish you and your family a good 2009. As always, thank you for sharing your journey with us.

They say that pictures speak a thousand words. I think that the one you chose to post with this particular blog does just that. The picture of Mona on this bridge is symbolic of her on her life journey. Just like you can’t see what’s on the other side of this bridge, no one can really predict what Mona will experience on her journey through this life.

I believe every family is faced with their own struggles and brokenness. But it is nonetheless a journey for each of us. Just as this medical issue with Mona has been a journey for you, Andy, Simon and Mona. The only thing that we can all be certain of in life is that there is a beginning to life and an end to life for all of us. What I think is important is what we choose to do with our experiences and how we share that along our journey.

I so admire you as a mother for pouring your heart and soul into this blog and sharing your experiences with us. You and your family are an inspiration to anyone facing any kind of struggles within our own family. You have taught us so much. I know that at this difficult time, that’s probably not very comforting for you. But know this, Mona is a real blessing. She has touched so many lives and has made so many people feel like a part of your lives.

I wish you all the best this holiday season. God bless you and your family.

Love,

Judy

I think there is one more dimension to this discussion, the community beyond the family. I know that I have grown, stretched and lived differently by being a part of the extended community around Ramona and the Deitrich family. I don’t for a minute think that is an intended consequence, but being in touch with Ramona’s fragility has made me feel more in touch with my own. Not only am I in touch with it, but I can accept the brokenness in my own family in part by experiencing brokenness in others. Because my response to Ramona and your family is one of compassion and love, I can believe that other people will respond that way to my brokenness too. I don’t have to respond to my own brokenness with so much judgment and condemnation (as I too often do).

Ramona has been such a gift to me. I don’t expect that what your community has gained in any way makes up for the pain and destruction that her medical journey has meant for you and your family. But it is part of the way God brings good from difficult circumstances.

I am not in your situation, but I hope that if I were, I would not value just the outcome for me, but also the outcomes for all those that my child would meet through his/her whole life.

Brad