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7 Sep 16

A Mothers Perspective

by Pauline Duncan


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My three children left for the Huntington’s Camp for young people today and I started mine!! It’s always mixed feelings when I give them a hug and send them out through Gateway 4! I feel proud as I watch three beautiful, courageous children board that plane, and a bit melancholy when they all go away together. Most of all I feel relieved. Finally I have space. Beautiful, joyous s-p-a-c-e!! For five days while they are at camp, within that space I will give myself the gift of allowing the myriad of emotions that go with living with Huntington’s Disease to surface. I am a person that deals up-front with my feelings as much as I can, as they appear. But it never ceases to amaze me, when all the routine of family suddenly stops, how much more feelings are just there below the surface waiting to be let out.

Over a hot cup of coffee relishing my very quiet surroundings, I admire the fact that the house has been tidy now for five hours! Then as space allows, the tears come and I grieve - for my children and the burden they are carrying, for their father who is courageously living with the disease, and for me, who does the best I can to nurture our lives along admidst it all. When the tears are dried I feel a sense of relief at having let it all out, and tired, suddenly overwhelmingly tired. I sleep.

The days go quite slow without the hub-bub of family comings and goings, I wallow unashamedly in this abundance of time. I am confident in knowing the kids are having a great time with all their activities and catching up with close froends they only get to see once a year at camp. I look forward to their stories and their new insights and the twinkle in their eye as they keep some things just for themselves! I too have had things for myself; like cappuccino with a friend, long hot bubble baths and dinner for one (bliss). I had time to write, time to think, time to laugh and time to cry. Huntington’s Disease has taught my children and I so much. We know how to make the very best of every opportunity, not least of all is the annual HD camp. For this I offer extreme gratitude to all those many supporters that make this possible. Thank you, the bubble baths were worth it!



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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

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