Monday, July 29, 2013

Keep Calm and Carry On

Today's gift is keep calm and carry on.

Remember in one of my posts from last week I mentioned in due time I would fill you in on how the Rett Monster has affected my daughter...again. Well, here it is.

The day we left for our trip to Texas....the first night on the daughter started having seizures. We were in complete shock and somewhat in denial.

We were full of questions and full of fear.

When we travel we always get two hotel rooms....makes sleeping much more enjoyable....and a way we can actually sleep!  The first night on the road my husband shared a room with my daughter and I stayed with our other two children.  He was the only one to witness my daughter having seizures that night.  He was nervous, scared and obviously wasn't expecting it!

It was four days later when we witnessed another series of seizures.  It was at this point we knew the Rett Monster was rearing its ugly

The last one on our trip was on July 5th at 1:26am ( yes, I remembered every single one ).  I couldn't sleep anymore as I was so upset for my daughter.  I really have not witnessed someone having a seizure before and it was scary. Watching your daughter shake uncontrollably is one of the worst things....ever.

I couldn't believe she had to start dealing with another aspect of Rett.  I couldn't believe it!  I emailed two of her doctors to ask for help and advice since we were traveling and away from home.   After I sent the emails, I just laid next to her....holding her hand and looking at her.

Just like I made a promise to her the day she was diagnosed with Rett, I made the same promise....I would never give up on her.   I believe in her and always will.

At this moment I told myself, this is just a bump in the road.   The best thing to do is to keep calm. Whatever happens is going to happen regardless of any "extra" worrying I do or do not do.  I also thought how my daughter could be affected in so many other ways by the Rett Monster or other medical conditions....and is not. While we are upset of her new issue, we still have so much to be thankful for.

Today she had an EEG performed so we can get a better picture of what is going on with her seizure activity.  After another "happy" day for my daughter I couldn't believe we had to go in and have this test done.   It doesn't hurt, but it takes time to place every electrode...28 to be exact...on her head, while keeping her still!  And then making sure she doesn't rip them off while entertaining her for the actual test.

The technician was one of the best we have had...ever!  Before he did anything to my daughter he explained it to her by showing her exactly what he was going to do....on her hand!  This right here is huge all by itself!  He just assumed she understood everything you say without us having to tell him!

To say my daughter rocked the EEG is an understatement!  She was awesome!  Through it all....she still had a smile!

This picture says it all...keep calm and carry on!  My daughter does this so well.  Whatever life hands her, she learns to overcome it.  She hardly let's something get her down.  Instead she hits it head on and keeps moving forward.  She knows it isn't easy, but she knows it is worth it!

I have learned to keep calm and carry on from my daughter.   It wasn't until this new issue was introduced into our lives that I truly saw myself take her motto and use it.

I had a really good cry when it first was apparent we were indeed dealing with seizures.  I then took a deep breath and decided I needed to carry on, carry on for my daughter.  I pray every night and leave all my worries with God.  By allowing him to worry for me, I am able to keep calm.

And I have to say, I should have listened to my daughter a long time ago....this way is much better!  I honestly feel like a different person.  This is just another storm we must ride out....but together we will carry on.

Here are three quotes for today....

I will not cause pain without allowing something new to be born- Isaiah 66:9

When God pushes you to the edge of difficulty trust him fully because two things can happen; either he'll catch you when you fall or he will teach you how to fly- Author Unknown

You never know you STRONG you are until being STRONG is the only choice you have- Author Unknown

P.S.  As I was writing this tonight, I went in to wake up my husband who had fallen asleep putting my daughter to bed and this is what I found....I am not the only one who loves to hold her hand!

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