By Cheryl Lehman
My family and I have attended almost every conference (2004, 2008, 2010, 2012, 2014 and 2016). We always look forward to these “family vacations” to get acquainted with our other “family” – our holoprosencephaly family. 2016 was different for me as it was the first time I have attended as a board member.
Leslie Harley had thought of a wonderful idea of creating a picture with all of the kids’ thumbprints on them. I volunteered to be in charge of this project and created a 2016 HPE family tree. During the conference, it was time consuming making sure ALL of the children in attendance were included (I would have felt terrible if we had left someone out!), but it was truly a blessing to get to meet each and every child and their parents! Although all these kids have the same brain abnormality, I could see first-hand how each child was so different yet their beauty shines through their challenges! HPE manifests itself in so many different ways and severities, but every one of these children bring great light to this world!
There were also a few devoted parents in attendance whose children are in their wonderful eternal home. I cannot imagine how hard it is to see the other families with their children when their arms are empty. Although this part of HPE is heartbreaking, they carry the legacy of their children on with their commitment to the other families. Therefore, we included these parents’ thumbprints in the sky in honor of their angels and turned them into balloons. This idea coincides with our tradition of releasing a balloon during the conferences for all the children who have passed away yet continue to impact this world.
This project also gave me the opportunity to talk to all the parents. I realize that although our lives are different in many ways, our journeys are very similar. Our unconditional love and passion for doing the best for our children are the same. And, there is nothing more comforting than knowing we are not travelling alone! The stories and information shared at these conferences are priceless! It is much more than just someone on the other side of the keyboard, too. It is real human interaction – the hugs, laughs and tears! We share our struggles, frustration, joy, sadness and HoPE that only other parents with kids like ours can truly understand.
Now, I have a daily reminder of these special souls I can see everyday hanging in my daughter’s bedroom. What a very special reminder of the family I will reunite with in 2018.
You can help make the 2018 Family Conference on Holoprosencephaly a reality for HPE families with a donation to Families for HoPE.
Lovely story…My son Michael is 28 yrs old and is unable to attend the conference ‘s . I hope to attend myself someday. If I could get a copy of the thumbprint s I would love to hang it up in Michael’s hospital room…
If you (someone) were selling small copies I’d certainly buy one.
Susan, mom of Beth, 27, septopreoptic