Take this for what it's worth
I am offended based on the idea that by my child being profoundly disabled was imperfect. That only in dying and going to where we assume is Heaven is she whole.
I thought that God made us all in his own image. That would mean that God is white, black, Asian, First Nations, gay, straight, disabled, able bodied etc etc. Why then is it that when a person with disabilities dies that we consider them healed? We say they are free to run, skip and jump without the encumbrances of what their lot in life was here on earth. From my perspective my child had nothing that needed 'healing'.
It bothers me no end that anyone would consider that Ailish or any one of my children is less than in the context of God and Heaven. Everyone knows that those with disabilities are considered dredges of society with little to nothing to offer and to be pitied. To then insinuate that God sees them as such by depicting and even stating bluntly that no longer are they trapped in their horrible bodies for me (and I only speak for me) repugnant.
Ailish, in her body that she had little to no voluntary control over epitomized what it is to be holy. The light that shone from her particularly when she smiled and laughed drew people to her. Her life was one of purity and innocence. It was impossible for her to commit sin and not because she couldn't move but because sin had no way in. Ailish knew none of the evils of the world. What Ailish did know was happiness. She was happy herself but instilled happiness in others. She knew love. All she experienced in her short lifetime was love and it emanated from her every pore transferring to everyone in her presence. Ailish knew gratitude...what it meant to be grateful and show it. She knew when her needs were met no matter what time of day that giving a smile, a coo or any signal that what you did to assist her was effective that you would know she was thankful. Ailish knew what it was to be satisfied and what was enough. How many of you can say that? Ailish was not always on a quest for more of anything. She was content with what she had. Ailish knew joy. She could find it in the smallest of things such as a toy chick peeping or God help her, my singing and she found joy every day.
I think in all that I have described it has to be clear that Ailish was perfection. She was and had almost everything that so many of us strive for all of our lives. No she did not have a body typical to the norm...far from it. Her language was not made of words or gestures or even eye gazes but came straight from her heart. Ailish did not even possess the most critical of organs that doctors have often described as necessary to be human yet she brought out the best in humanity. Understandably children and adults such as Ailish and the majority of my others will require care all of their lives and the financial support of local and provincial governments and will not put money back into the coffers. What they have to offer society however is contributory in its own right and in many ways outshines any financial contribution they could make if able.
This all being said, why would Ailish or my little H should it come sooner than later, or anyone with a disability need to be "healed" or "freed" from who and what they are? I will give you saying "free from pain" and I will also agree with free from seizures. I'm all for that. But from who and what they are, count me out.
I just think that comments such as I have mentioned and then this grave marker (which is beautiful and sweet) imply that instead of being born just as they were supposed to be that the children need to be fixed and that they are more tragic than whole and complete.
I realize my perspective is different from many particularly those who have birthed children with disabilities. It seems to be the common consensus among parents however that though their grief over the loss of what was 'supposed' to be is on a continuum that they too come to the realization of where perfection and beauty really lie in life.
I understand the grave marker and I know from where in the heart of its designer it came. I think it's beautiful in its own right. I believe that is signifies the reaching a place of no pain and suffering and an existence of non compare. I just have been witness to how it is being interpreted by things I have heard over the years and in losing my own child perceived as suffering.
Differing opinions and thought processes are definitely what make the world go round and make life interesting. These are mine.