“To wish was to hope, and to hope was to expect”
-Jane Austen, Sense and Sensibility
In our CDKL5 Info support group a sibling of a CDKL5-affected child has chosen to do a project on the disorder. She asked for those of us willing to expose our vulnerability and honesty to answer the following question:
“What do you wish your child, sibling, or friend did not have to experience that is a result of CDKL5; or what do you wish they could experience but have been limited by due to CDKL5?”
After much reflection this was our response to that CDKL5-related question:
I wish my CDKL5 Child did not have to experience seizures.
I wish her sister did not have to experience the separation from her CDKL5 sister and myself during times where extra care is required. (i.e. hospital visits).
I wish we as the parents of a CDKL5 child did not have to feel the hopelessness associated with the disorder knowing the ONLY thing we can do is LOVE them while they endure such pain and suffering.
I wish society knew and understood what we consider “normal.” And, I wish we were not desensitized to our circumstances to the point of “normal.”
http://cw33.com/2014/09/03/hope-4-harper-hemp-oil-helps-4-year-old-with-rare-disorder/
Our Normal is Changing and We are Still in this Race
Thanks to the addition of a supplement we stumbled upon a year ago, Real Scientific Hemp Oil from HempMeds, we are experiencing much less suffering from seizure activity. However, the struggles of survival still remain for both Harper and our family. This battle will be ours for the remainder of her life. Thank God we do not have to battle it alone. So many of you surround and support us so we do not have the feeling of isolation in our circumstances, and for that we Thank You!
To those near and far…Run4Hope is this Saturday, September 6th at Andy Brown Park East. REGISTRATION STILL OPEN!! Come see Harper and Lily and all their smiles while supporting SEIZURE RESEARCH AND AWARENESS!
If you cannot make it…..Virtual Participation is an option!
A registration bag will be mailed to you! You will receive items you would have gotten had you been here in person, T-shirt, backpack, water bottle and more, without having to actually RUN!
SIGN UP FOR RUN4HOPE TODAY:
https://secure.getmeregistered.com/get_information.php?event_id=10761