Making memories one day at a time.......and then I write about it.

Wednesday, November 7, 2007

Another Levi miracle

Last Friday while Brian and I were out on a date we were talking about Levi's latest miracle. Brian made the suggestion that I should be writing these things down so that we will remember. It is hard to be grateful if you do not remember.

I think too often I fall into the pitfall of wishing for the "big miracle" with Levi. A cure. I tend to forget how many miracles we've had with Levi along the way.

If I were to start at the beginning it would be overwhelming and take me forever I think so I'm going to work my way backwards as I remember things as Levi's story really is a beautiful story.

Because of Levi I have learned to rely heavily on our Father in heaven for his guidance in taking care of Levi. I know that Levi is my son but he is also Heavenly Father's son and He knows Levi far better than I and how to take care of Levi. He has made impressions on my mind and I've not always known why but in some cases it has eventually been made known to me and I have been grateful and have sat in awe thinking of the beauty of it all.

Here is one such instance. Ever since Levi was born I have felt strongly that undisturbed sleep and rest are very important for Levi. He still needs a good 12 hours of sleep at night. I have felt strongly that he needs to get to bed early and 7:00 P.M. seems to work good for him. As best we can we have tried to stick to this firmly. It has been difficult at times because it means Levi misses out on a lot of things. It also means if our family is doing an activity (which a lot start at 7:00 P.M.) then either Brian or I need to stay home with Levi so our family is split up a bit.

Even though it has been difficult I have felt inside of me that this is very important. I can't explain the feelings but I have known this is something that we must do. There have been a few things that have been quite strong inside of me that I have known that I've needed to do for Levi. It is hard to describe excepting if anyone were to try to get me to stop or talk me out of it I would feel the need to rise up and fight for these feelings. That is how strong and powerful they are.

Anyway, Levi's neurologists have been prescribing different medications for Levi and we have turned them down. We've not felt good about medicating Levi at this time. At one time there was a drug that was being pushed that was supposedly helping the children like Levi. We did not feel good about it.

A few weeks ago Levi had an appointment at Primary Children's hospital. As I was meeting with his neurologist the topic of rest came up and I told them how firm we are in Levi's rest and how we stick to a very strict sleep schedule for him. The neurologist that is on the research team for what Levi has then admitted that they are going in another direction. The medication that they thought was helping these children hasn't helped very many and they are now turning in the direction of sleep and rest! They are finding that when these children have attacks it is through sleep and rest that they are able to heal and some of the older children who can start to feel an attack coming on....if they go and sleep in a quiet dark room they are able to ward off the attack.

As I left the hospital I marveled and my heart was a prayer of thanks. I was surrounded by brilliant minds who are trying SO hard to find a cure. They have gone to years of school and I am grateful to them for all that they do but I am also grateful that Levi's "doctor" is our Father in Heaven. Once again, he has impressed on my mind how to take care of Levi.

This has happened many times. I am so grateful for the gift of the Holy Ghost. I am grateful for the comfort that He brings. I do not know how people go through life when they have to rely on the natural man............there have been times when we have been in scary situations with Levi and I've not known what to do and have felt the feelings of a panicky parent trying to make a decision based on what "I" know. I am grateful that at these times I have been able to retreat to a quiet spot and ask my Heavenly Father what He would have me do in taking care of Levi our son and in the quiet the answers have come and along with the answers calm and peace.

1 comment:

  1. There is so much we can learn when we listen. This is a powerful thing for you to share, and I have learned from it. Every parent can actually call upon this blessing—it's just we don't think of asking. l am so proud of you. And you need to send this link to your family, so they can read these things!!

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