How wonderful to have this forum! I didn’t realize how much I needed a peer to confide in until a couple of years after my grandson, Malcolm, was diagnosed. That was in 1996 when Malcolm was 2 1/2.
In the beginning I busied myself with fundraising and creating awareness – I live too far away to participate in day to day care. When Malcolm was 4 and started pump therapy, I wrote a little booklet for him about pumps. That was the start of my present ‘career’.
I create educational material for kids and make it freely available on my website. It was through this hobby that I heard from other grandparents.
I hadn’t known, until then, that I needed them. What a blessing it was to share my concerns with folks who truly understood. (I had been keeping many worries to myself because I didn’t want to add to my daughter’s burden). We grandparents tried to help each other balance that fine line between help and interference. We cheered each other’s triumphs, like being brave enough to give a shot – our kids do it every day, no big deal to them, but for us grandparents, a major event and the applause was appreciated. And we were there also to calm each other’s fears. That little group drifted apart – changing circumstances and email addresses.
Now, thanks to this forum, I have a support group once again.
Sandra J. Hollenberg,
Sandra receives e-mail at thehollenbergs[@]shaw.ca
July 17, 2003