Tag: special needs adoption

adoption, Special Needs

Parenting when you’re stuck in the mud

I am a horse trainer’s daughter so the majority of my life has been lived in the country.   When I was little, we lived on a ranch with a horse pasture just outside our front door.  I had tons of adventures, and several injuries, in that pasture.  My brothers and I built an obstacle course for our bicycles there and…

It's only fair to share...Share on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on StumbleUponShare on RedditShare on TumblrPin on Pinterest

continue reading

Counseling, Epilepsy, parenting, PCDH19, Special Needs

7 tips for parenting special needs siblings

I am writing this post from the Starbucks in our children’s hospital. For once, I’m not here with Alyssa. She is spending this rainy, Saturday afternoon at a family birthday party while I’m in the city with one of her brothers.  He is here to spend a few hours with kids like him, boys and girls who have siblings with…

It's only fair to share...Share on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on StumbleUponShare on RedditShare on TumblrPin on Pinterest

continue reading

Counseling, Epilepsy, PCDH19

Sick Days for the Soul

Most people still don’t understand that epilepsy can be fatal and is actually a leading cause of death. Families like mine are very aware of the statistics. We know that we could lose our children while they sleep and that every seizure could be their last. Madeleine’s death was still a devastating shock though. She was a vibrant 16-year-old with her life ahead of her and a family that adored her.

It's only fair to share...Share on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on StumbleUponShare on RedditShare on TumblrPin on Pinterest

continue reading

Epilepsy, PCDH19, Special Needs

In the shadow of the valley of SUDEP

Four times this month, the monster has won. Four times. Four mothers have been forced to bury their small children. Four kids are gone because of a disorder that most of the world still sees as non-life threatening in spite of the 50,000 people in the US who die seizure related deaths every year.

I was sitting on the couch a few days ago reading Facebook when another post stole my breath. A sweet girl was curled up in her daddy’s arms watching TV and then she was gone. No warning. No preparation. No goodbyes. Just gone. I looked down at my own little girl with her head on my shoulder and I felt my heart stop because as much as I try to pretend we’re OK, I know that monster lives in my house too.

It's only fair to share...Share on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on StumbleUponShare on RedditShare on TumblrPin on Pinterest

continue reading

adoption, Epilepsy

Adoption & Epilepsy

I relate to the other parents of children with special needs on many levels but I don’t bear the guilt of having been the one to pass on Alyssa’s genetic disorder or the constant questions of if it was something I did caused her problems. I relate to adoptive parents too but our story isn’t just about adoption anymore. I switch back and forth between groups depending on the support I need at the moment.

It's only fair to share...Share on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on StumbleUponShare on RedditShare on TumblrPin on Pinterest

continue reading