Having faith when you hate something.

Hi friends,

Sorry it is so late in the day, We had doctor appointments all day today.

Can I say I am really beginning to hate this disease.

Who knew such a minute detail in your body could cause so very many issues,

and be so unpredictable and so hard to follow.

No 2 people who have dup15 have the same symptoms it seems. 

Almost like snowflakes no 2 are alike. So although you can kinda know what might happen, it might not either. So we felt very fortunate not to have had any seizures yet, but it tricked us again and yes she did.

They have begun!! Although i'm not really surprised and although it doesn't scare me for the fact that she has them, (because I had seizures for years) or that they will be a inconvenience in our lives.

I hate the fact that I remember how they make you feel emotionally. I was an adult when mine began so I could deal with the emotions as a mature person and it was so hard. But to watch a child, who for the most part is about as emotional as a 4 year old, and can't control much in her life. Feeling so set apart, or isolated or alone. and that is exactly what they make you feel like, that and so many other emotions. And it is so hard to describe all that you feel and experience it is hard to put into words. So I have so much empathy for these kids. I can say I understand when you can't describe things. I have been there and know. So that knowing  is what concerns me. That is the scary part of knowing, how she will process it all?

And what is next? What do we need to do to prepare for things to come? Who knows.

I guess that is where faith and God come in. He does know and He does understand pain, He does care what is happening in this tiny body, He does love her and wants the best for her, He does give us hope and peace. I guess that is all we need. To have the faith, to put the trust, in Jesus. 

So our journey is sidetracked once again.

So tonight keep Chrissy and all the other dup 15 kids and their families in your prayers.

The journey may be long and tiring, but the goal is worth the time and energy, eternity in Heaven.

Blessings to you and your kids

Kiss them extra tonight and hug them harder.

Always

Suszi