What I Would Say... - One Beautiful Life

What would I say? What would I say if I had the unhindered attention of a new parent of a child with a disability?

First I would weep with them. Not because I feel sorry for them but because sometimes it hurts. You see when we become parents of a child with a disability we must grieve, we must mourn the ideals that we had and the moments that we thought we would share. We can experience all of the stages normally associated with grief such as denial, anger, bargaining, depression and finally acceptance. For some, it takes longer to get through one stage or another and that’s okay.

Secondly, I would tell them it’s going to be okay. Because it is. As much as it doesn’t seem like it is.
But what is going to speed this process of grief along however, is a surrendering of not only ideals but of expectations. I relayed a story recently of when my parents would tell me at the supper table, “it’s not a bad taste, it’s just a different taste.” And on a completely surface level this is true. Sure, life will possibly look very different, not only logistically but emotionally, but when we say “different” all we mean is not “normal”. But what is normal anyway? What we mean, is that life is not going to look the way we think it should look like, or thought it would look like, or the way Sammy’s life over there looks like.

When Down Syndrome glares at me now, which is not very often, it is not Ella’s quality of life that makes me sad, it is my own “plight” which makes me frustrated, tired and depressed. It is because I am not living the life that I believe to be “normal”. While “all” the other children move past the toddler stage, a stage of getting into everything, running into the street, potting training, gaining independence and learning to communicate with words, I am reminded that Ella is delayed and I am still changing diapers, constantly distracted, constantly speaking for her and constantly cleaning up. And while all the other moms go out for coffee during Ballet class, I am in there, beside her telling her to stay, to sit, to stand, to listen. And those days are hard.

But there are other days when I am reminded that while Ella’s peers move past the toddler stage, we are here and there is nothing wrong with this place. Because instead of rushing from one independence to the next we get to savour the stages a little longer. I am thankful as we celebrate each and every victory like three syllable words and two word sentences which passed over without notice for my oldest. I feel blessed as I watch my daughter learn to gallop and skip, and hop and twirl. And I feel a peace as we sit in the early hours of the morning cuddling as she sips her milk.

We have been taught and conditioned to have expectations of “normal”. We are asked to chart progress, report anomalies and fear “different”. As I said in a previous post,

We have been taught by “professionals” what to expect by 6 month or two years or by the time they finish highschool, but it does not mean we have to subscribe to them and it does not mean that they are right. That is beauty of individuals with Down Syndrome, or Autism, or Cerebral Palsy: they take what the world is so certain of and remind us that God is the creator, and he knew what he was doing. They are not mistakes, they are not unwanted, they are children of God. Sure, there are realities that we will have to face that others may not but mothering a child with a disability is more the same than different, as are the children we care for.

It’s going to be okay. Because God is in control.