The Hairy Lemon, Your Colleague’s Grandmother, and Making Information Accessible

By | 2018-07-05T14:11:20+00:00 July 5th, 2018|Uncategorized|

The Hairy Lemon, Your Colleague’s Grandmother, and Making Information Accessible By guest blogger Stephanie Stewart-Hill   Say you are a researcher working in Dublin and your colleague's grandmother comes to visit. She takes you and your coworker out to lunch at a popular, yet quirky, pub called the Hairy Lemon. You order food and a [...]

Dress yourself- and your mind- for the job

By | 2018-06-27T14:20:46+00:00 June 27th, 2018|Uncategorized|

Dress yourself- and your mind- for the job By guest blogger Stephanie Stewart-Hill   In the movie Picture Perfect starring Jennifer Aniston and Kevin Bacon, Jennifer Aniston plays a character named Kate who misses a job promotion that she feels she rightfully deserves. She has been working for the company for a while, yet her [...]

Reflections on a College Experience

By | 2016-03-11T19:58:55+00:00 March 11th, 2016|22q|

The election for a new government in Ireland is over.  One of my concerns about the short run-up to the election (4 weeks) is that some very good campaigns and "voices" were not given the chance to be heard. In particular, I really liked the #disableinequality campaign and the huge amount of good work that [...]

A Mother’s Story of 22q

By | 2016-02-29T15:45:02+00:00 February 29th, 2016|22q|

As we progress through Rare Disease Day, you’ll read lots of useful facts and figures about 22q. Rather than give you more of that type of information, this post is about one mother’s experience of having a child with 22q. Many thanks to Anne Lawlor for this very personal account. Many thanks to Aine for [...]

(Still) Learning to Cope with my Daughter’s Health Problems.

By | 2016-01-15T14:22:22+00:00 January 15th, 2016|22q|

Many thanks to Sam Radford for allowing these honest words to be shared.  I think that many people will see a reflection of their own experience in these words (originally posted on Medium). It is nearly two years since I first wrote publicly about my struggles with coming to terms with my daughter’s chromosomal disorder [...]

Confession of a 22q Parent

By | 2015-12-08T14:50:25+00:00 December 8th, 2015|22q|

  I think there is a lot of truth in this one.   Every afternoon when walking towards my daughter's school I literally say a little prayer that she had a day without her head hurting, leg hurting, stomach hurting, or her feelings being hurt because someone teased her about the way she talks.   [...]

Áine Lawlor – Growing Up (2010).

By | 2015-11-29T23:23:57+00:00 November 29th, 2015|22q|

At a recent meeting in Sheffield (England), someone reported about a girl from Ireland and her mother. The report was that they were "legends". Who were they?  Here is the first blog from this dynamic duo.   There was a time when I would hear a voice in my head - I sometimes thought I [...]

Assistive Technology

By | 2015-11-27T09:45:49+00:00 November 27th, 2015|Uncategorized|

I was not able to attend the NCSE (National Council for Special Education) Annual Conference this year (November, 2015). Anne Lawlor from 22q Ireland was able to attend, and has since been in contact with one of the speakers, Gina Grant. Gina has been very generous and has sent us the text of the talk.  [...]

Living With DiGeorge.

By | 2015-11-07T11:48:54+00:00 November 7th, 2015|22q|

I guess I didn’t want to leave the warm cocoon of my mother’s belly because of all the problems in the world I would face with my health. That was evident when they found that when I exited finally the cord was wrapped around my neck.  So life begins as a “blue” baby.  And that’s [...]