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"So this is my first Blog! So much to share.....
I am trying to create this to share with people the ways to survive, cry, heal, teach, share, and love their child with special need. Our daughter, Sophia, was born with Spina Bifida, Hydrocephalus and Chiari Malformation just to name a few. She is 4 and a half now.
Everyday with Sophia is a wonderfully new and exciting one! I think this was the greatest gift God could have ever given my husband and me..seriously! We have been married for almost 6 years now and in those 6 years we have faced more heartache, setbacks, loss, grief, and found more love and belief in each other, than most people will encounter in their one lifetime!
I am so lucky to have him in our live.
Now back to what i wanted to discuss today!
Today is a somewhat overly cloudy day today. Most people or children who have hydrocephalus have what are called "shunt headaches". I am noticing more and more with Sophia that whenever a front comes in she starts to get really whiny and fussy. and since Sophia cant always communicate verabally we have to guess what hurts or ails her. Sophia can speak some words. Most importantly she speaks! we never take the word "momma, daddy, love u" ever for granted! those are the best words i could ever heard in my life and probably will ever hear!
anyways, thru out the night last night Sophia was up and down. Whining and crying in her sleep. All we could do was to put our hand on her forehead and stroke it till she calmed down. Waking her up during one of those episodes would scare her into a seizure. So its a touchy situation.
You do the best you can as a parent, I hope, knowing any decision will always have some impact on your child! It is hard to be a parent regardless if you have one child or 18, or wether you have a special needs child or a healthy child.
So sophia has been awake since 3am! Yep! 3 am! it is now 11am and she is up in her scoliosis brace and wheelchair, getting her daily breathing treatments, watching the wonderpets! and guess what she is Happy! As long as I can always see a smile on my child's face I am grateful.
so i will end this post with a thought and the motto that i always live with...
Life does not end with a diagnosis, it simply just begins
Also have you hugged your child/children today and told them how much you love them? Do it now cause life is so busy sometimes that you forget what you have. and what you have is each other and with that is love!"
All you need is Love
Becky
anyways, thru out the night last night Sophia was up and down. Whining and crying in her sleep. All we could do was to put our hand on her forehead and stroke it till she calmed down. Waking her up during one of those episodes would scare her into a seizure. So its a touchy situation.
You do the best you can as a parent, I hope, knowing any decision will always have some impact on your child! It is hard to be a parent regardless if you have one child or 18, or wether you have a special needs child or a healthy child.
So sophia has been awake since 3am! Yep! 3 am! it is now 11am and she is up in her scoliosis brace and wheelchair, getting her daily breathing treatments, watching the wonderpets! and guess what she is Happy! As long as I can always see a smile on my child's face I am grateful.
so i will end this post with a thought and the motto that i always live with...
Life does not end with a diagnosis, it simply just begins
Also have you hugged your child/children today and told them how much you love them? Do it now cause life is so busy sometimes that you forget what you have. and what you have is each other and with that is love!"
All you need is Love
Becky
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