With all of the shopping, wrapping, partying and whatnot this time of year, it hardly seems like a good time for reflection and introspection. But what the heck, here goes anyway…

I’ve been surprised these past months at the amount of emotion and grief I have felt over this latest bit of news about Ramona. In some ways it’s felt like a punch in the stomach, like a replay of her initial diagnosis. It’s that panicky, despairing feeing that there is no hope, that we’ve done something wrong, that we can’t go on. But on the other hand it’s business as usual and there aren’t any of the daily physical dramas that filled the early days of all this. Somehow the feeding tube, the oxygen, the meds made me feel like it was okay to be sad, okay to be worried and stressed. Now with our “normal” life, I feel like I don’t have cause to be a mess. But I’ve sort of been a mess anyway.

I’ve been following an online feud between Minette and India . The opposing views that are represented here bring up some difficult and painful questions about the role of medical technology, the boundaries parents have when building their families and what is in the best interest of our society and families when it comes to special needs or medically fragile children. I have read these articles many times, I respect the discourse and wanted to share my own two cents.

Minette says that families are damaged by the experience of raising such a child. That they bring grief to their parents and siblings. She’s right, raising Ramona has been hard so far. I cannot imagine what our life would be like if Ramona were healthy, but I do believe it would be easier in many ways. But Minette’s solution is to not carry these children to term. That, in my view, is very wrong. Who is she, who are we to decide which children are fit to live? Knowing first hand the range of quality of life issues involved and the variation there is from child to child, I find her ideas on the subject monstrous and hard-hearted.

Minette seems to have accepted a lie, which is that we are somehow entitled to wholeness in our children and our families. She recognizes the “broken” nature of a family dealing with a sick child and her solution is to abort the child so that the whole family won’t be tainted by the “brokeness” of the sick child. What she fails to see is that we’re all broken and fall short of wholeness and wellness. Deciding how broken someone can be before they just aren’t allowed to live is arrogant and cruel in my view. I suspect Minette has not come to terms with her own brokeness, although of course I know nothing of her background or her inner life.

India says that the love we feel for our children makes the anxiety and pain of their illness worth the ride. She’s right. Raising Ramona so far has been wonderful and I can’t imagine missing out on all of the wonderful things she has brought into our lives. But India seems to bristle at acknowledging the huge cost that caring for our special needs children places on society, on the health care system and on the resources of the parents caring for them. I worry that parents of special needs/medically fragile kids who are struggling will read her words and think that they must accept their children’s illnesses as a positive thing. That discussing the tougher issues of grief and loss is somehow not okay.

I think I fall somewhere in the middle. I would, of course, never wish Ramona to not be here, to not be in our lives. I don’t even wish for her chromosomes to be whole. The genetic deletion she has is part of who she is and she wouldn’t be Ramona without it. But there isn’t a day that goes by that I don’t wish her heart was whole, that I don’t wish this would all go away. I try to focus on the positive and praise God for the unexpected blessings that have come into our lives because of Ramona. But I am still grieving deeply for her, for all of us.

For me, the key is to acknowledge our powerlessness and try and separate the illness from the child. I must somehow find a way to grieve Ramona’s illness while celebrating Ramona. I have to accept that although the extreme nature of Ramona’s care brings up medical ethics issues, she is not a hypothetical situation. She is my daughter and we have cared for her in the way we thought best, bringing all of our available resources to bear. We didn’t choose this illness for her, we are powerless in so many ways and just doing what we can for her. I don’t pretend to understand someone who would choose to abort a child because of a birth defect or chromosome issue, but I’ve never faced that choice and I choose to believe that they are also doing what they think is right.

God must be sovereign. God hears our prayers and knows our pain. God sees our brokeness and has a plan to heal the world. It is not our job to cull the broken from our midst. We should not be afraid that suffering is God’s will for us. We all are loved and are living in a fallen world. And tomorrow we celebrate the Light of Hope, the light at the end of the tunnel. My prayer this Christmas is that, no matter what God has in store for Ramona, that I will be able to align myself with His will. That I will be able to hold onto hope for us all and trust in the promises God has made to us.

Here’s a shot of Mona on our trip to Michigan this summer. She had just started walking and I couldn’t believe it when she just trotted, no problem, all the way across this long bridge.

the-journey