Tuesday, February 22, 2011


I have been dreaming about him a lot lately.

And in every dream, he is healed.

It feels so good to be able to see his face in my dreams, and every time I dream about him, I remember the next morning how tightly I held onto him throughout the dream. I never wake up sad. Almost relieved that I got to spend some time with him while dreaming.

I have made so much progress in my grieving, and together, Renzi and I have made great strides in healing our hearts but it's tricky when you are dealing with the emotions that come at such random times. Like, it seems like everytime we watch American Idol...I cry. I know, I know, some of the stories are gut wrenching and really can get to you, but I am boo hooing at least six different times during the show. I also have cried watching The Bachelor recently, but please don't tell anyone that. :) I cried when Emily got to spend time with her daughter last night after being gone for so long...on a dating show. What is wrong with me???? :)

The thing is, I will have these little cries and then I feel much better almost immediately. It's like I am totally in tune with the fact that clearly my body needs to cry, so I cry and then BAM. I feel better. Before Isaiah died, I would hold in a lot of tears but it has felt so good to let them flow whenever I feel like it. I am taking every feeling I am feeling and trying to grow with it and go with it.

I say all of this to lead up to this story.

We had an amazing thing happen before Christmas.

Renzi and I had lunch with Isaiah's amazing neurologist Dr. Norman one day. We had been planning it for awhile and finally we all had the chance to sit down together. It was a great lunch and good to see her. Before our lunch was over I asked her the question, "If Renzi and I decide some day to have another baby, what do you think the likelihood would be that our child could have epilepsy like Isaiah?"

She talked about statistics and Isaiah's condition specifically. She talked about Renzi and I and how healthy we are and how epilepsy does not run in either of our families. And then she said, "I wish we would have run the SCN1A gene mutation test. That would help me answer that question for you all a lot better."

I knew instantly exactly what test she was talking about. I remember it was January of last year and we were in the midst of Isaiah's seizures but we hadn't yet been to Texas Children's Hospital yet and we had not received the diagnosis of his epilepsy at this point. I remember taking both boys, by myself to Baptist so that Isaiah could have blood drawn for this particular test. I marched into the lab holding both boys (both were over 20 lbs at this time) and put Isaiah in my lap with my arms wrapped around him and somehow wedged Jackson between my legs so that he couldn't get out and the lab tech went to work trying to get some blood from Isaiah. I remember thinking about 10 seconds in why in the world I didn't bring help with me because Isaiah was screaming from the needle and Jackson was squirming and biting me on the leg. I was sweating and willing the tech to hurry up. Several vials of blood later, and what felt like an eternity, we left the lab (all of us at this point crying, including me!) and I vowed never again to do that alone again.

The blood was sent off to a lab in Nebraska and we actually found out the next day we had gotten into Texas Children's and we left the following week. The test was going to cost about $3000 outside of what insurance would cover. Since we ended up getting into Texas Children's we decided to hold off on the test to find out what happened while we were in Texas.

As most of you know, we found out on this trip that Isaiah did in fact, have epilepsy so we decided not to spend the money on the test. We found out what we needed to know at that time, so we decided to move forward with his diagnosis.

Never thought about that test again, until that lunch with Dr. Norman.

I asked if there was any possible way the lab would still have his blood sample. Dr. Norman said it was unlikely because it had been almost a year and most labs destroy any unused and used samples. She said she would make a call that afternoon to the lab in Nebraska and just see.

And what do you know. They still had his blood. ALL of it.

So, we ran the test. This test would let us know whether or not Isaiah had a genetically inherited type of severe epilepsy. If it came back positive then that would mean he was a carrier of the gene and then Renzi or I could be tested to see which one of us was also a carrier of the gene. If it came back negative, then that would mean that his epilepsy was just a fluke and that somehow when he was growing in my womb that one tiny flap of his brain didn't grow right and there was nothing that caused it to happen that way.

Well, after about three weeks we got the results back.

The results were negative. This means that if Renzi and I decide to have more children someday it makes it very unlikely that he or she would be affected with epilepsy like Isaiah.

When I got the email with the results I thought I would be relieved. But you know what I was? Angry.

Angry not because I wanted something to be wrong with my child. Angry because I still don't know why he died. Angry because the Medical Examiner's office still can't determine a cause of death for my child. Everything they have found thus far has been inconclusive. Angry because I still don't know why.

Which is why I think it is so significant that in my dreams about him recently, he is healed. I have come to realize through these dreams and through my crying when I need to cry that I am probably never going to know why my baby died. I am never going to get the answers I am looking for. I believe that his being healed in my dreams is God's way of telling me to let it go. He is telling me that he is ok. That some day I will get to see my baby again. And I will get to see him healed!!! What a glorious reunion that will be!

And that, really and truly takes my anger away.


Wife of Wright said...

Such a beautiful entry LeeAnne. I am so happy that you and your family continue to heal and grow, you are in my thoughts and prayers often.


Haley & Tyler's mommy said...

Thank you so much, Lee, for sharing these stories. And for sharing all the feelings that go along with them. I'm amazed & inspired by everything you write. Even when it's about marbles. ;)
Keep it up. You're doing good things here.
Love you!

Carrie said...

Thanks for sharing that. Praying for you.

Annie said...

I'm so happy Isaiah is visiting you in your dreams, LeeAnne. What a blessing!

Thank you for sharing your stories. You are inspiring!

Rita said...

I'm so glad Isaiah is visiting you in your dreams.