"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, September 2, 2009

Undiagnosed

We take Marissa to see her geneticist one week from today. She hasn't seen her since July 2008. I am hopeful she will not only be surprised at how far Marissa has come but that she will be utterly blown away. Marissa has developed so much in the last year. We left her office last year without a diagnosis and it kind of stung a bit. I have a feeling this year we will leave without a diagnosis again, but I am actually feeling good about it, if not hoping for it. Marissa has shown us that our theories of what diagnosis she might have just don't fit anymore.

For me, the geneticist used to be one of the more important doctors that Marissa saw. Up until about a year ago. I used to have a really hard time with not having a primary diagnosis. I wanted to know why I had such a difficult pregnancy. I wanted to know why I started bleeding and thought I was going to miscarry (again) around 8 weeks; why we had a two-vessel umbilical cord; why she had an enlarged ventricle in her brain discovered at 20 weeks; why her growth slowed significantly around 31 weeks and why she stopped growing altogether around 37 weeks. I wanted answers as to why she was the way she was after she was born. I wanted to know why she had the brain anomaly; the dysmorphic facial features; the airway issues; the heart problem; the GI problems; the kidney problems. I thought if we knew answers, we could know how to help her better.

I realized a while back that we don't necessarily have to know a primary diagnosis to help her. Her heart was fixed without a diagnosis. Her kidney issues were fixed without a diagnosis. Her airway issues will most likely be fixed without a diagnosis. She was recently discharged from physical therapy and will be discharged from occupational therapy next week. She is overcoming her physical disabilities and limitations. And, what she can't overcome, she has shown us she will adapt to and learn to work with.

At least for the time being, I am glad Marissa does not have a diagnosis.

Now, I don't want to offend any of my wonderful friends by what I am going to say next. Please, I mean no offense.

I think that along with some diagnoses might come a tendency to put labels and limits on people. Like, "If we can just squeeze her into this box right here, we will know what her future will hold. We will know how she will develop and grow because people with this diagnosis develop and grow a certain way. We will know how to treat her, not only medically, but as a person". This carries with it the potential to unwittingly clip her wings before she could show if she could fly. I may be wrong, but I have come to believe that diagnoses are for doctors, insurance companies and school officials, not necessarily for parents, family members, friends and schoolmates. Diagnoses shouldn't be for society in general but they do tend to be, unfortunately. Diagnoses allow people to treat someone in a certain way, but not necessarily how that person should be treated.

And in the bigger scheme of things in life, it doesn't really matter. I know Marissa is a child of God and He created her just the way she was supposed to be.

For you created my inmost being;

you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made.

Psalm 139: 13-14

As a wise and kind preacher from my youth (who just happens to be my Dad) demonstrated for me with a sign hanging on his office wall,

"I know I'm somebody, 'cause God don't make no junk".



Too right.

10 comments:

Hope said...

I couldn't agree more about cliping their wings before they have a chance to fly. Marissa continues to show everyone what an amazing fighter she is. I hope the appt goes well next week.

Ava sees the geneticist next Thursday for blood test follow-up.

Amy said...

Hi Alicia,

I read your post after coming across it by the word undiagnosed. I have a child who is undiagnosed and has been for 13 years. Her symptoms started before birth but we knew about them at birth. I agree to some extent that diagnoses can be limiting in some peoples perspective of a child. I also see the importance of a diagnosis to families to some degree, meaning that in some cases a diagnosis may give us more information about what is affecting a child. We can't know if that information will be helpful in treatment or not. There are so many thoughts that go through a parents mind when they have a child without a diagnosis. In my experiences those thoughts are like a roller coaster. I am mostly ok with not having a diagnosis for my daughter, but when new things pop up with her the frustration of not knowing starts again.

If you haven’t seen information about Syndromes Without A Name, you might be interested in checking it out. www.undiagnosed-usa.org

KH said...

Well, said, friend.

The VW's said...

I LOVE, LOVE, LOVE this post! Amen Sister! Diagnoses definitely DO NOT define a person! And, Marissa is who she is, because God made her this way! She is perfect in His sight and perfect altogether, because God DOESN'T make mistakes!

Look at Marissa go! She certainly hasn't had her "wings cut" by any of this! I see a wonderful future for her and I dare anyone to just try to keep her from flying!!!

Love the pictures! Marissa, you are TOO cute! HUGS!!!

Colleen said...

I'm so glad you are finding peace about this. If you knew what she had you still wouldn't know exactly what her future held or how to better treat her medical issues. Trust me, we have a diagnoses and we are writing our own book since no 2 children are exactly alike.

Marissa is a beautiful girl and God knew exactly what he was doing when he formed her.

As my Mother-in-law once said "God doesn't make mistakes."

Nana and PaPa said...

I appreciate reading Amy's comments. I think it goes both ways...diagnosis....or no diagnosis....some parents may really need to know. But some, like you have shared, may think maybe we put too much importance in the diagnoses. I appreciate all of your blog friends and their comments about challenges with their beautiful little angels..each one a creation unique all their own. And God loves each unique angel...down to the numbered hairs on their head. How special each one is and the way they have touched each life in their family. I'm rambling..lol And I remember well that sign you reference to...it is so true...we need that reminder sometimes. Love to all...Love, Nana & PaPa

Janay said...

I'm right there with ya! We go to get results of genetic testing in October and I could care less what they say :0) The genetic dr took one look at him interacting with his environment and ruled out 90% of syndromes anyway. I think some of his specialists would like a diagnosis but only because they are curious (for lack of a better work) about Milo. I have always maintained that he is who he is and he is a unique miracle of God who has taught so many doctors so many things about life and the resilence of all Gods creations. Oh and it felt so good the day after he was decannulated to parade him infront of a PICU doctor who wanted to "unplug" him ;0)

Dana said...

Beautifully said. On one hand I totally agree with you but on the other it makes it hard to plan for their future. You are never sure when to push and when to accept.

Glad that you are not worried about the diagonsis anymore. We aren't really either.

My new motto is "See the kid not the tubes"

Hugs

Shauna Quintero said...

I loved this blog! Even though we are on slightly different paths, our fight for our children is the same.

I am so on board 100% with being okay NOT having a diagnosis. To me a diagnosis really limits my child. Many parents have laundrey lists of their childrens' diagnoses. I don't want to be there. I'd rather watch my child to what he will do rather than label him and then see if his actions are justified by his label.

A diagnosis also scares me. It's filled with "He may never's" and I refuse to put limits on my son.

I'll take God's diagnosis and follow with faith and prayer.

Awesome blog!

Jessica mommy to Alex/ RTS said...

I'm sorry I'm so late here! Great post! While I am so thankful that we have a diagnosis, because of the network of friends and resources it has brought me, I am careful not to lable Alex with it. I use the diagnosis as a guide, but not a box! You are right it doesn't define our sweeties!