Thursday, September 15, 2011

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.


Cheryl (in Buffalo) said...

Just sending you hugs Anne.....Isaiah just saw the pictures of Grace and said "Is that Isabella?" I always thought your Grace reminded me of my beautiful Isabella...also a beauty without a diagnosis.....Take care.

Sarah said...

I love that when you tell others about Grace, you say "she doesn't know how to talk yet but she loves to be talked to"... that is an explanation with "grace" and leads people to talk to your beautiful girl and treat her with patience and compassion. It is an invitation to love her. What a beautiful example you are setting for all three of your children.

I am sorry that you don't have a name for what challenges Grace faces... I wish for you that you had that answer. But do know, that you are loved and prayed for and your beautiful baby girl is so blessed to have you for her mama!

I cannot wait to hug you in person someday, my friend. And, I promise to talk (but probably not sing... I don't think Grace would like THAT music) to your precious baby girl and show her that she is loved by many that have never been blessed to have met her... yet.


Gardenia said...

I'm also sending hugs your way today. It must be difficult not to know what the cause or diagnosis is.

Bekki said...

Oh I so feel your pain. I have a son who was born with different "differences". Mentally, he is healthy, but different anomalies. No one has ever been able to say anything more than, "we know he has a syndrome, we just don't know which syndrome" I have gone on to have 2 children with heart defects, and one who is nearly blind. They continue to test us, but come up with nothing. My eldest is 15 now and I remember so badly just needing a name. I'm past that now, and I no longer thing about it, we just deal with the day to day. I completely understand how much a name means. Doesn't fix a darn thing, but it just seems like it would help to have a name! Hugs mama, you are definitely not alone.

Nonnie said...

Anne, you have such a beautiful heart. I am so thankful I had a chance to meet Grace and your amazing family. Grace has already achieved milestones you never imagined she would and hopefully, she will continue to do that. Prayers always coming your way.

Mama Bear said...

Wow! I was drawn to your post because we've been living this same situation. We know our son has a serious mental illness, but nobody can give us an official name. It could be bipolar disorder, but because he is a child they can't use that label. Then on top of that the mental health community are disputing if it is even possible for children to get bipolar disorder. Then we have the researcher that are trying to come up with a new diagnosis so kids like mine can be put into that category.

I feel for you because I too know how desperate a mom can feel in not knowing what your child has. Like you said, I don't know what questions to ask, what his future will look like or who I can find support in.

Too often doctors push away this desire we have, telling us that a name doesn't change our son, but what they don't understand is that it changes our perspective, it changes our goals and expectations. It gives us tools to cope and allows us to prepare our kids for their future.

Waiting for a name is part of our pain.

Goddess in Progress said...

Just came across your post via BlogHer. I am in that type of limbo with my seven-month-old daughter, too. Immediately after she was born, it was as you say, a collection of symptoms and characteristics. Low tone, abnormal MRI, failure to thrive, severe reflux... etc, etc. The geneticists and neurologists think she's fascinating, but have given us no answers as of yet.

I couldn't agree more - giving it a name wouldn't change her. It certainly wouldn't "fix" anything. But it gives us a starting point. An idea of where we might be heading, what range to expect.

Sometimes I can let go of all expectations and just be happy with whatever progress she does have. But sometimes I just wish I had a crystal ball, or even something to tell me *roughly* what her life will be like in 3, 10, 20 years, you know?

Anyways, just wanted to let you know I read your post, I really identify, and I'm thinking about your family.

Blessed x3 said...

Anne- I was in your shoes not too long ago with my daughter. We did not know the name of the disease Ashleigh has. It took her neurologist 6 years to find the name of it. It was hard, long road, but I think one day soon you will know. If you want to read about our journey with our daughter, Ashleigh, here is her website: . I also want to write about you in a blog entry in my blog. It brings up memories for me. I will link back to this page. Hugs to you all. Melissa