what's in a name?

With the start of the school year comes so many changes.  New grades for each of the kids.  New teachers for Luke and Grace.  New classmates for all three kids.  New friends in these new rooms.  A new soccer team for John, with new teammates.  A new women's bible study group for me.  We even have new families in our small group.

I am enjoying all these changes and the chance to meet new people.  Both for me and for my kids.  It is an exciting time in their young lives.  I am enjoying the opportunity for all of us to make new friends.  However, one thing that always takes me by surprise is the fact that I am unprepared to explain Grace and her special needs to new people.

I just don't have a good answer for the questions.  Although, most people don't ask outright what is wrong with your daughter.  Come to think of it, only children ask direct questions about Grace.  Most adults wait for me or my husband to initiate an answer to their unspoken questions. And since she looks like a typically developing child, it is not until she does something strange or they try to talk to her that we encounter the questions.

The reality of the situation is, we don't know what is wrong with our daughter.  We don't have a diagnosis.  We don't have a name for it.  Daily we fight and pray against something unnamed.  We, primarily me, struggle against not having a name for what is wrong with Grace.  We have a bunch of symptoms; non-verbal, mentally retarded, physically delayed, total care, and others.  But they don't add up to a name. 

I am currently reading One Thousand Gifts, by Ann Voskamp and she wrote something that took my breath away.  She is discussing the fact that they do not know what is wrong with their hogs and why they are loosing litters.  Her husband does some research and believes he discovers the cause of the problem, it is not a resolution to their problem just a name for it.  On page 52 she writes his comments when he thinks he knows what is wrong, "God's good.  Just naming it...Just naming it.  When you don't have a name for something, you're haunted by the shadows.  It ages you." 

When I read that I said to myself, 'Yes.  That's it'.  I have struggled for four years without a diagnosis for Grace.  We have had many tests and seen many specialists and had some really horrible things ruled out.  However, we have not come up with an answer.  I fully understand that having a name for what is wrong with your child is sometimes still very painful.  We know families who have heard the names of Rhetts Syndrome, childhood cancer, mitochondrial disease, down syndrome and others.  So I know that having a name isn't a ticket out but it is a ticket. 

Once you have a ticket with your child's syndrome, disease or delay on it, you are able to find others who have that same ticket.  You are able to find support and possibly hope or at least help.  I find that not knowing what Grace has is very isolating.  Not only do we not know what her future looks like because we have no diagnosis, we have no idea what questions to ask or to whom to ask our questions.  Or how to answer people who ask us questions.

I also want to make sure that I say that having a name for it or a diagnosis would not change our love for Grace or the way that we challenge her to reach milestones and fight for her to grow and develop.  We would not take a diagnosis as a box to put her in, but rather an answer to the questions of what is wrong with our daughter.   As a starting point.  As a name.


As of right now, we have no where else to go for a diagnosis.  We have seen all the specialists that we can think of to go to.  We have had all the latest testing done.  We have done hours of on-line research.  We are left without a name and without a diagnosis.

We know that we are not alone in this gray area.  We know that many, many other families struggle through the challenges of having special needs or disabled children without a diagnosis attached to their child.  I have met many mothers who share this pain of not knowing.  And the isolating reality that we may never know what is wrong with our children.

On most days, I do not even think about the fact that we have no diagnosis for Grace.  Instead I think about the issues that we face and the adaptations to our families life that must be made because we have a child with special needs.   I think about how I can still provide my boys with all the opportunities they need to lead a normal childhood, while we raise a child with both mental and physical delays.  I think about how I can keep my daughter safe when my family is out in public, when she doesn't always respond to her name and she can't communicate.

For now, 'my answer to what is wrong with her?' is simple.  I say, we don't have a diagnosis but we know that when she was a baby something happened to her brain to cause it to stop growing.  Because of that, she is delayed in many ways.  For example, Grace doesn't have the ability to talk right now but she loves to be talked to and she loves music.  I try and keep it simple, but still convey the severity of her special needs.  I'm still perfecting my answer and hope to be able to give my boys an example they can follow when people start asking them about their sister.